Tumour diary: A plea to the medics

By Ivan Noble
BBC News Online science writer

BBC News Online science and technology writer Ivan Noble was diagnosed with a malignant brain tumour in August 2002.

Since then he has been sharing his experiences in an online diary.

We now have only a day to go until our son is due to be born.

All being well, he should make his move some time in the next two weeks.

What with a pregnancy, two major brain operations and ongoing treatment of my tumour, we have had plenty of experience of dealing with the medical profession over the last nine months.

I have written before about my admiration for doctors' skill and persistence, so I hope I am not too far out of line now deciding to suggest a few improvements some of them might make.

It is easy for doctors to lose sight of what it is like to be a patient

First of all, the problem of delivering bad news.

No-one likes delivering bad news.

I know that I am not the first person to write this, but the shoe problem still needs dealing with.

When delivering bad news, a doctor really should be looking the patient in the eye, not staring at his or her feet.

Bad news is bad news, but I would have felt much less distressed when I was given my diagnosis had the doctor concerned spent a little more time explaining what was going to happen to me next and what could be done to help me.

As it was I left hospital in total shock and only slowly began to piece together what my treatment would mean.

The doctor who gave me my diagnosis could not wait to get out of the room and hand me over to a nurse.

Looking back now over almost two years, I have dealt with several shocks and I can put things into perspective now.

But back at the beginning a little more time and a few more strong, encouraging words would have made that first week so much less painful.

I assume some doctors must feel a sense of failure when they give bad news to a patient.

But there has to be another way of looking at it.

Whatever the prognosis, there is always some way forward, even if the treatment is palliative rather than curative.

And I know from personal experience that when someone did stand in front of me and tell me in a confident tone how my treatment was going to go forward, I felt a whole lot better.

Who are you?

It is easy for doctors to lose sight of what it is like to be a patient.

Doctors are part of a system which they understand.

I know I am not the only person who believes happier patients live longer and recuperate faster

Patients frequently do not understand what is going on. If I go to a new place, I never do.

It takes less than a minute to say to a patient "I am Dr So-and-so. I am a specialist in dealing with X. I am here to help you with Y problem. Dr Whatsit is the doctor who sent you to me."

But much of the time it never happens.

Doctors dress in a much friendlier way these days, but that does lead to situations where if the doctor does not identify herself as such, no-one is the wiser.

And terms like SHO and Registrar do not help people who do not habitually hang around hospitals.

When someone says "Registrar" to me, I think "of Births, Marriages and Deaths".

Who am I?

Patients like to think the doctor knows who they are.

Obviously very few doctors can remember all their patients in detail - this is why they have notes.

But it really does make a difference to the psychological impact a doctor's care makes on a patient if, before the patient gets through the door, the doctor has scanned through enough of the notes to know what the patient was last seen for and when.

And when patients are nearly always seen by a different doctor each time they come in, there has to be something that can be done to improve continuity.

It really is quite disconcerting to go with your partner to an ante-natal check up and to realise that the doctor appears either not to have had time to read the semi-legible notes or not to be able to make sense of what the last person wrote.

The overall impression is of being in a system that expanded by evolution, not design.

That is of course inevitable in such a massive and long standing institution as the health service.

But there has to be time to look at some things and ask whether they are done for the benefit of patients, administrative convenience or after all this time, no-one at all.

Maybe it seems as if I am asking for jam on it when I know I live in a developed country where good care is mostly free.

But I know I am not the only person who believes happier patients live longer and recuperate faster.

Please use the postform below to send your messages to Ivan.

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Your comments

Everything you say is right, I had the exact same experience as Jenny and her mum nine years ago when my late husband Richard was diagnosed with a brain tumour. We were given the information piecemeal by all the consultants involved and the only person who told me the truth was my GP and the fact that I was able to read Richard's notes while waiting for a scan. He had fantastic care from his surgeon oncologist and neurologist but do you know the secret? To know as much as they do! I became a lay expert in brain tumours and their treatment by spending hours on the internet researching medical and drug sites. Once we could talk in their language we were treated as human beings and not statistics.
Caroline Wallis, UK

Best of all, the consultant called me Beverley throughout the appointment Karen, London

Five weeks ago, I was told I may have leukaemia and was left worrying until last Thursday, when I was finally told for sure... no doctor has once stopped to reassure me or talk to me in terms of "You can get better". I was told, and shoved out the door. No-one looked me in the face, it seemed that their only aim was to get me out the room in the shortest amount of time possible, I felt like a leper, even worse, an uninformed leper. Breaking the bad news was to my feet and five minutes later, I was outside, not knowing what had hit me. I am 16 years of age, my parents weren't there, and the doctor didn't think twice about how I might have felt.

Best of all, the consultant called me Beverley throughout the appointment (my name is in fact Karen) This was all NHS - I have recently seen a doctor through private healthcare (via contacts)... Funny how he set me at ease within the first few minutes of entering his room... Nonetheless, I still firmly intend to study medicine, once I'm healthy that is... let's hope some things will have changed by then.
Karen, London, UK

Well done for saying this Ivan! I have been an allied health professional for over 30 years and a patient on a few occasions. You've stated exactly what I have felt and witnessed in my line of work. Do send this to Medical Schools. It is here that our future doctors are trained. Many new house officers are arrogant and unprepared for the bad side of life and ill health. If their bosses (the Consultants) have a poor bedside manner, as many surgeons especially seem to have, they need to be taught good manners and communication skills at Med School. Also that they are only part of a caring team. Good luck with your new arrival and your future health.
Sue, South Wales

I have quoted your inspiring interview (I think it was on Today FM's last word) many times and today decided to see if I could find your website. I have asked lots of people if they had heard of you. It's wonderful to read your comments as I thought your attitude was phenomenal and having worked in the health service for many years, agree whole heartedly with your observations. Wishing you all the best on your new addition to the family. I look forward to reading more..
Annette Neill, Cavan, Ireland

"I think I will see the new baby. I have a good feeling." You wrote that in February, Ivan. Since then, with your determination and courage, you've come through some low times. Well done for making some constructive advice to the medical profession. They need it. I am wishing you, and especially your wife, a swift labour. Enjoy your baby. There's no greater joy. Congratulations to you both.
Andy Cullen, UK

Ivan, your comments are so spot on. My mother who is 90 in September has gone through a very trying time lately and if the doctors and consultants had speeded up things she would not have had to suffer so much pain and discomfort. On being discharged and still in pain, she was told the pain was in her mind - try not to think of it, and was given an unbelievable amount of tablets. She has since suffered a very bad bout of pneumonia which nearly killed her but luckily enough she has pulled through thanks to a loving family, willpower and a daily dram of Scottish whisky which was her miracle cure.

Pensioners are often frightened when being admitted to hospitals and I believe that communication and empathy skills training should be imperative for medical staff at all levels to help and enhance their understanding of future patients. My best wishes and enjoy every minute of your new arrival!
Ruth Fraser, Scotland, UK

Keep going Ivan, I want to see a photo of you with your new baby here soon.
Gary, UK

I have seen examples of poor communication skills from highly qualified and respected consultants Ellen, UK

As a future doctor (well, come February), I have read your story and taken on board its message. Throughout my medical training, I have seen examples of poor communication skills from highly qualified and respected consultants. Too bad they give those of us that train in the medical schools of today a bad reputation! We practice communication skills in the safe environment of a videotaped session with actors and it has been most informative and hopefully will stand me in good stead for the first time I have to tell someone the bad news. However not all patients want to be fully informed of their situation and some of the skill is in judging how much information is enough for each individual patient. Keep fighting on and look forward to hearing how you are enjoying the sleepless nights when your next little one arrives.
Ellen, UK

Lest we not forget that doctors are human too, who can, will and have been patients themselves. It's hard to deliver bad news in any profession. It's easy to say to be constructive, but when in a stressed NHS we're lucky just to be treated.
Mo

I agree. When my dad was told he had bowel cancer (he later died after a second op), the communication was dreadful. I've just finished my first year of a graduate medicine degree and, thanks to regular communication skills sessions, I can at least say that those from courses like mine are likely to be better in such situations.
David Burgess, UK

I got diagnosed with bowel cancer 5 months ago and I received my news from a specialist nurse over the phone while sitting at my desk at work.. I can't fault the subsequent treatment I have had but they could have better chosen their method and moment to give me this life altering news...
Steve, Herts, UK

The consultant informed me about the disease and that was it Susan, Scotland

I agree with you Ivan. I can remember only too well, that fateful day when I was diagnosed with Hodgkin's Lymphoma. The consultant informed me about the disease and that was it. He told me that I would need chemotherapy and radiotherapy and that they would start immediately, but I wasn't informed about anything else. I was completely stunned and I burst into tears when I left the hospital. It would have been so much easier if the doctor had just let me know that they could treat the disease, as I didn't know that then. That was nearly 3 years ago now, but I still remember it like it happened yesterday. Anyway, good luck with the birth of your second child and I wish you and your family all the best.
Susan, Scotland

So glad to see your update. I check every day for it. I wish you and your family well in the next few exciting weeks welcoming your new baby into the world. My daughter is about to go to Uni to study medicine...I printed out your comments for her, they give an insight that cannot be taught.
Pauline Silverwood, UK

I cannot begin to imagine how the doctors must feel when they have to tell you the news. When I was diagnosed with ovarian cancer, after "routine" surgery. He told me all the symptoms and sizes of tumour, but couldn't get his tongue around the word cancer. However I do know what it felt like to tell my parents, as this task was left to me and in a lot of ways, looking back on it, I was grateful for that. That is not to take away from the fact that 17 years later , I am still grateful for the prompt action they took to save my life and I too have been blessed with two children they said I would never have after surgery and aggressive chemotherapy. I wish you and your family all the very best, it will be so much easier to tell and hear the good news of the birth of your new child.
Patricia Evemy, UK

Salaam Ivan, This is my first time that I read this page and found useful, I will follow up and going to share your nice advice with my colleagues in our country. Waiting to hear the good news about your new guest, wish you and your family best of luck.
Wahida Azizi, Afghanistan

Doctors of the future will be better at this if others are being trained as I am Lisa Arnold, UK

Hi Ivan, Just a note to let you know as a second year medical student that we are being trained now with the use of actors, psychologists and communication lecturers to improve our breaking bad news to patients! Thankfully I haven't had to do this yet but I am sure when it comes that I will look back and think of the training I have had and what you said today. Doctors of the future will be better at this if others are being trained as I am, I promise! All the best for the future and your new arrival.
Lisa Arnold, UK

As a doctor, I am well aware that the system does not serve patients, or indeed doctors, all that well. As you suggest Ivan, the system has evolved rather than had any rational design work put into it. The driving force behind the evolution of clinics is to get as many people seen by as few doctors as possible. This is due to the long term lack of doctors in this country (less per head than any country in western Europe), and clearly leads to an impersonal service where patients emotional needs are left somewhat on the back burner. There's still no excuse for poor communication skills, but the essential part of doctor's competence has to be the ability to do the job safely.
Matthew Seaburne-May, UK

Hi Ivan I am a surgeon and I agree that it is often very difficult to break bad news. In my experience however, most patients seem to know that you are about to give them bad news as soon as you walk into the room. Many of my colleagues would agree with this experience and I suspect that it must be body language or the patient's own perception of their problem.
One thing I have tried in the past is to record the "bad news" consultation on tape and give it to the patient who can then go over the details later since most information given subsequent to the, "I'm sorry its cancer" statement is forgotten. Your comments are a useful reminder that what may be another day at work for a healthcare professional is perhaps the most stressful day in the life of the patient. My sincerest best wishes are with you and your family and best wishes to your wife when the wee one comes.
Stephen Kettlewell, UK

Great to hear from you again Ivan, good luck with the new arrival when he decides to make his entrance. My boyfriend is now an SHO (Senior House Officer!) and I spend a lot of time explaining to him the 'patient' point of view. Doctors and nurses put up with a lot but that doesn't make them immune to criticism and suggestions for change. They do a great job in difficult circumstances but unless they are unlucky, they rarely see how it is on the other side - being told the bad news or waiting and waiting for appointments. So a little bit of empathy would perhaps improve their great service a bit more. Best wishes Ivan - keep us posted!
Sarah, UK

I hope your comments provide some food for thought! Debs, UK

I've recently been involved in the recruitment of doctors into a private organisation, and I agree that communication skills can be a problem. They do a wonderful job but in my experience there are a minority who have a standard approach not tailored to the individual. Obviously I appreciate that being the bearer of bad news isn't an easy job, but as a sick person I'd like to think that a doctor would take the time to think about how that news is delivered. I hope your comments provide some food for thought! Congratulations and good luck with the new arrival!
Debs, UK

Glad to see this. My mother died last August of stomach cancer and all of her doctors behaved as described except for the oncologist, who looked at us and told us the diagnosis, the options, and added a personal note when he told me my mother was the most aware, intelligent 90-year old he'd ever treated. Just getting the facts clearly and feeling the doctor was acknowledging he couldn't save her, but really wished he could, made a big difference.
Grace Ackerman, USA

Ivan, I have following your story for a while, as a nurse I wholeheartedly agree with your comments and will pass them on to my colleagues. I hope that reading your diary has helped me to gain a better understanding of how people feel about and deal with diagnosis such as yours. Wishing you and your wife all the best as you await your new arrival.
Claire, Ireland

This gave us all time to deal with the illness the way my father wanted it Pam UK, England

When my father was diagnosed with terminal cancer his doctors at St Mary's hospital in Portsmouth called the whole family down for a round table conference, told us the results, explained what could be done but told us the main decisions were my fathers. How wonderful because news did not come second-hand, decisions were taken from us and handed to the patient. This gave us all time to deal with the illness the way my father wanted it. Sadly my father has passed on but thanks to the way the doctors dealt with the whole family at once, our grieving was less traumatic and we were part of it. Surely this is the way to handle bad news and less costly in the long run - none of us siblings had to see a counsellor thanks to their effort.
Pam UK, England

This doesn't only happen in the UK. Doctors learn a lot whilst qualifying but they still need to learn more about dealing with the public as people. I understand GPs do but this doesn't seem to be a priority for hospital doctors. Also, like any specialist area, there is a lot of jargon, which needs explanation. I understand that some doctors in the US are using specially prepared material for explaining the diagnosis and the treatment which would probably help a lot.
Hugh Kennedy, Germany

My daughter has just completed her second year in medicine, I am sending this to her, as your personal perspective is so much more informative than many lectures could ever be!
Margaret, UK

Well done on highlighting this omission Sarah, New Zealand

Hi Ivan, I stumbled across your story today by co-incidence and it interested me on many levels. Firstly, as a mother of three, I'm very excited for you both as you await the birth of your child. Good luck! Secondly, I studied Medical Sociology and was particularly interested in doctor/patient relationships. I absolutely agree that the delivery of bad news and similar 'social' doctoring is an essential element so often neglected in training. Well done on highlighting this omission and let's hope someone takes note. Fortunately, the care around childbirth seems to have improved significantly in recent years - this has been my experience both in New Zealand and England - so good wishes for an easy and quick birth - and a lovely baby at the end of it.
Sarah, New Zealand

I have been reading your diary since the beginning and this is the first time I've seen you have something close to a rant. Good for you - nice to see you are still fighting! All the best.
Damon Evans, UK

My husband suffers from kidney failure. We had to visit the renal clinic several times in the past two years. I totally agree with the comments that you have made about how things could be made better.
Shona, UK

Great to hear from you again. I completely agree with the points you have made today and even if one or two doctors read this and change the way the deal with their patients then you have done your job. But onto happier moments, good luck to you and your wife for the coming of your baby son. Hope all goes great and please let us know when the bundle of joy arrives, we'll be waiting!
Judi Dockery, Ireland

Spot on Ivan! After four years working in communications in the health services I can confirm most doctors have the communications skills of a gnat! They are fantastic at their jobs - except when they have to talk to mere mortals about things like prognosis, diagnosis etc. Even those terms are a mystery to a population that may have as many of 20% adults functionally illiterate. So c'mon doctor chaps, get some training in basic communications skills. Ivan, as always you are inspiring - I wish you and your family (plus one soon!) they very, very best.
Jonathan Traynor, Northern Ireland

Eventually, we found a wonderful neurologist who was able to deliver the bad news in a way that treated my mother with dignity, honesty and, yes, he looked at her and us in the eyes Jenny, UK

I am so glad to read your update. My mother died of a brain tumour some six years ago and the pain we went through was magnified and compounded by her initial consultant's total inability to deliver bad news. For the life of me I can't understand why the BMA don't have effective communication skills as a core competency for a neurologist who, after all, can't be delivering good news for a large percentage of his work life. Phrases like if you can't stand the heat, don't stay in the kitchen come to mind. What made it worse was that local GPs I spoke to after my mother's death all knew about this consultant's ineptitude but did nothing to address it. Eventually, we found a wonderful neurologist who was able to deliver the bad news in a way that treated my mother with dignity, honesty and, yes, he looked at her and us in the eyes. Maybe you've found a cause where, in addition to the help you give others through your column, you can really make a difference.
Jenny, UK

I could not agree more. I accompanied my mother to Christies, Manchester last week to receive results of her mammography and other tests following previous treatment for melanoma. The consultant failed to attend his clinic and all patients were asked to leave and were advised they would be sent further appointments. Far from ideal when waiting for results.
Marie Tierney, England

OK - your message is coming across loud and clear! All of your pieces are a great insight into how things feel on the other side of the consulting room desk, and this one in particular gives us some most welcome suggestions for improvement. I am a doctor, and whilst realising there is some way to go, I think and hope that our communication skills are starting to move in the right direction. Most medical schools have only formally taught these sorts of skills for the last 10 years - emphasising just the sort of points you illustrate, using role plays with actors as well as real life situations. It's always a battle in big organisations, but hopefully patients in the future will feel treated rather more as individuals instead of being processed by a system. Best wishes and good luck in your journey through the NHS and congratulations on your imminent new arrival.
James Woolley, UK

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