More Daunting Decisions – What Surgeon

I was warned that I would have a long wait from diagnosis to consultant appointment, and it was several months before I received a letter from my chosen hospital.  This informed me that I would be under the care of Surgeon A.  When I received my appointment letter, I did a Google search of Surgeon A and was reassured by his depth of experience and accomplishments.

At the appointment, I found Surgeon A to be very kind and empathetic.  He explained that his approach was to take a long-term view of my care over the next 40 years and that I was really too young for surgery.  That was strangely flattering.  However, I was greatly taken aback when he said I should wait for surgery until I was 55-years-old because I would be lucky if a replacement joint lasted 6-8 years.

I was so surprised by this very limited life for a new joint that I struggled to take in much more of what he said while he gave me additional advice about movement and pain management.  In my head, the phrase “lucky to get 6 to 8 years” was on a permanent loop.  As I prepared to go, he mentioned that he would see me annually to check my condition and that, if at any time, I felt the pain was becoming unmanageable, he would do my surgery sooner.

Off I went home thinking that I should now focus on accepting the limitations I was experiencing with good grace.  I decided to embrace my high pain threshold and stop whining.

In the year that followed, before my next appointment with Surgeon A, I was appointed as a Patient Representative with the NJR and began to become much better educated on the subject of joint replacement surgery.  Having access to the data in the Annual Report, the Public and Patient Guide and, most importantly, to other patients’ experiences was an enormous help in giving me a better understanding of my condition and the options available to me.

It was my good fortune that an early meeting of the NJR Patient Network was held on the eve of my follow up appointment.  My fellow patients were very open in telling me about how they went about choosing their hospital, surgeon and even, in some cases, their precise replacement device!

I was given excellent advice on how I might frame my questions to understand my options in greater depth and I jotted these down on the train ride home.

On reflection, I know that I benefited enormously from the advice of one of the Network members who described her many surgeries.  Her view is that it is vital to have a surgeon-patient relationship where the patient feels able to ask questions and understand the rationale for any procedures.  She described the times she was unwilling to compromise when she just didn’t “click” with a surgeon.

Next day, I went to my annual review with a spring in my limping step.  Armed with my list of questions and the latest copy of the NJR Patient and Public Guide, I felt better informed and more optimistic about asking the right questions.  I was determined to listen carefully, to write everything down and to avoid getting unduly distracted by any single unexpected answer.

As I entered the waiting room, I was further buoyed by the site of these posters which covered every wall:

Njr poster

How wonderful that the message on this poster so succinctly captured the questions on my list!  My expectations were raised, and I was anticipating a much more informative discussion.

When I was called in, my first surprise was that I was not seeing Surgeon A, but his fresh-faced registrar.  He was perfectly pleasant, but did not inspire confidence when he asked how I was going on with my knee.  I replied that my knee was fine, but I was there regarding my hip.  “Your hip?  Are you sure?” he asked.  I promised him that I was indeed sure that it was my hip keeping me up at night and not my knee.  I gestured at the computer screen in front of us which was displaying an x-ray of my pelvis.

Once we agreed that it really was my hip we needed to discuss, I took out my list of questions and asked what was planned for me and what my options were.

The fresh-faced registrar said that, unfortunately, he really was unable to comment on my options.  He added that if I remained under the care of Surgeon A, I would receive a cemented ceramic hip and a type of incision with certain risks.  I asked if this was because these approaches represented the best option for my circumstances, and was told, no, these were the approaches Surgeon A felt most comfortable with, and, therefore, what all his patients received.

In the end, I resorted to the question that women of my age rely on: “If I were your Mum, what would you advise me to do?”  He said he would advise me to seek a second opinion with Surgeon B with whom he was also training.

I confess I felt a bit deflated by this meeting.  Putting posters in the waiting room exhorting patients to “Ask 3 Questions” should, at the least, be met with clinicians who are prepared to answer the 3 questions.

I discussed the meeting with family and friends and decided to follow the advice and to seek a second opinion via my GP.  I was told that I would have to undergo another orthopaedic assessment and that the current waiting list was several months.  I said that was fine, believing I had nothing to lose, particularly as Surgeon A wanted me to wait another eight years before having my joint replaced.

Eventually, I received an appointment with a specialist physiotherapist for the assessment.  This was a real turning point for me.  I was very fortunate to be seen by someone who was exceptionally caring and utterly determined that I should receive the right treatment.

She advised me of three things that made a massive difference to me:

  • I was doing the right thing in seeking a second opinion
  • Doing so was not, as I feared, a betrayal of Surgeon A
  • My increasing pain and decreasing mobility were relevant considerations.

What’s more, she advised me that if I were not happy with my second opinion, I should seek a third, fourth, fifth and so on until I felt completely confident.

Second Time Very Unlucky

Again, after a long wait, I received a date for my second opinion with Surgeon B.  A Google search yielded evidence of his extensive experience, and the nurse at the hospital (pre-consultation x-ray) advised me that he is an excellent surgeon.  Unbidden, she added that I should be prepared to answer his questions succinctly and should focus my answers exclusively on my hip as any irrelevant detail or venturing into trivia would be most unwelcome.

Heeding her words, I made sure I had my questions written down and rehearsed for pithiness.  I took heart in spotting that the “Ask 3 Questions” posters were still adorning the walls of the waiting room.

The meeting was a complete disaster.

Surgeon B arrived accompanied by a young woman physiotherapist who stared at the floor and did not speak before, during or after the consultation.

He asked me why I was there, and I explained I had been advised to seek a second opinion by his registrar as I had questions about the treatment planned for me and how long a new joint would last.  Before I could finish my first question about what my options were, he shouted, “Stop!  Stop there.  You have no business asking about such things.”  He clearly felt that my interest was inappropriate and that I was in some way challenging him.

It was a very uncomfortable ten minutes during which Surgeon B went on to tell me that although I was meddling and out of line, he would describe his practice and the approach he would take if he were doing my surgery.  On average, his patients get an average of 20 years from a new hip, he identified the surgical approach he would take and named the replacement device he would select.

I could not wait to leave and felt deeply upset.  I felt horribly embarrassed, as though I had been presumptuous and overstepped the mark and then got found out and was soundly told off.  It was awful.

I really did not know what to do.  I felt I had the choice of Surgeon A, a very kind person who was predicting a limited outcome or Surgeon B, who predicted a much more successful result, but who made me feel bad.

This choice rattled around in my head for weeks.  I decided to keep taking the codeine and avoided making a choice between Surgeon A or Surgeon B.

At the time, I had forgotten the sage words of advice from other patients and physios about continuing to ask for opinions until you feel confident in your choice of surgeon.  I’m not sure why I forgot about this advice, but I was stuck in a mental holding pattern between choice A and B.

Some time later, a wonderful NJR colleague asked me how I had gone on with my second opinion.  I outlined the bare bones of the meeting and the dilemma I felt I faced.  She insisted I should seek a third opinion immediately and set about making this happen.  I am immensely grateful to her.

Third Time Is The Charm

As a direct result of my NJR colleague’s intervention, I sought an appointment with Surgeon C.  By this stage, I had had a fall and was feeling concerned about the way my hip function was deteriorating.

In light of past experience, I concluded that I should not attend any further appointments on my own.  Mike, my husband, agreed to rearrange his schedule to come with me.

As an aside, I would say, no matter how confident and prepared you feel as the patient, it really is important to have someone else there to take in the information you are being given and to remind you if you forget to raise something.

There is a world of difference between acting as an advocate for someone else and receiving information yourself, as the patient.  I have concluded that it is very difficult to process information dispassionately and accurately when it’s your body being discussed.  I recognised that I had a tendency to get stuck on a detail mid-conversation, and I certainly did not want a repeat of my experience with Surgeon B.

So with some trepidation, we arrived for a meeting with the very experienced Surgeon C.  I need not have worried.

Instantly, we were put at ease and filled with confidence.  Surgeon C reviewed my notes and x-rays and asked me questions about my pain and movement.  He explained my situation clearly in terms that were easy to understand and gave me his advice – that I should not hesitate in having my hip replaced.

He inspired total confidence in every way.  I did not need my list of questions and concentrated on listening to his advice which was comprehensive, clear and reassuring.

When he said, “I’m thinking because of your age, activity and height, option A device should be….and that I should have option B as a back up just in case, but I would be interested to hear your view,” I wanted to shout “hallelujah!”   Not because I had a strong view on device A or B, but because this was confirmation for me that Surgeon C was applying his knowledge and experience to work out what would be best for me given my specific situation.  That was all I really needed to know.

That he was so delightfully nice and kind and such a great communicator provided the icing on the cake.

I wish his approach could be bottled and shared with other surgeons.  I hope he has lots of students who are learning from his technical skill as well as his humanity and communication skills.

Because of Surgeon C, I am now facing my date with destiny in two days with much more confidence than I imagined possible.

I am sorry for the self-indulgent length of this posting.  I hope that describing my experiences may help other patients feel confident in choosing a surgeon.

To recap the excellent advice I received from others:

  1. Do not be reluctant to request another opinion
  2. It is important that you feel confident in your choice of surgeon
  3. Do review the surgeon-level data available at: www.njrsurgeonhospitalprofile.org.uk This is a developing area, and the data available now indicates whether your surgeon is providing data to the NJR and how many similar operations he or she performed.
  4. Do prepare questions (the Ask 3 Questions are spot on)
  5. If possible, always bring someone else to any consultations.
  6. Do seek advice and support.  Arthritis Care provides a great online forum http://arthritiscareforum.org.uk/ and a free helpline.  Patients are also very welcome to join the NJR Patient Network.
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11 Responses to More Daunting Decisions – What Surgeon

  1. Julie says:

    I have read this post with interest because I chose a different hospital to have a revised keyhole operation in order to avoid my “surgeon B”, but still ended up having to deal him again at the hospital of my choice. This revised procedure hasn’t been a success so my next step is THR, but I really don’t want this surgeon again. I was aware that you could chose a different hospital under the NHS but not the surgeon. At my THR consultation my Surgeon B recited my notes at me and didn’t let me get a word in. He didn’t want to go into what type of hip replacement I would get. I was made to feel like I had no right concerning myself with the details of my operation. He handed me the standard NHS THR leaflet and showed me the door. I have no confidence in him and was wondering how you go about getting a different surgeon within the NHS. If he is my only choice I will seriously consider private options.

    • Hi Julie. I’m very sorry to hear about your “surgeon B” experiences. Would it be worth raising your concern with your GP and asking for some advice on the options? Good luck and I very much hope you can find a surgeon who inspires confidence.
      Best wishes
      Sue

  2. Helen Porter says:

    I am pleased I am not the only person having difficulty with surgeons. I need a revision and I am now on my 6th surgeon not including the surgeon who did the original op. I have kissed a lot of frogs and hope I have now found my prince!! Comments made to me range from ‘Why haven’t you recovered after 16 months, people recover after 16months, what is it about you, you’re a liability’, ‘don’t expect me to teach you all I know’, and ‘ H______, let me do my job’ when I asked a few questions. I responded to the last very senior surgeon by saying ‘I’ve already let a surgeon do his job and look at the state I’m in’!
    I do hope that one day we will be able to find out without asking the surgeon his post surgery outcomes on this website. I feel that full openness and transparency would improve patient outcomes and lower revision rates markedly.

  3. Betty Hales says:

    Hi Sue and Wendy,
    I had my hospital appointment today for assessment with a kind and knowledgable nurse practitioner. From his examination and the deterioration shown in the X-rays taken today, compared to the one my GP requested in December, he has put me on the waiting list and booked an appointment with the surgeon. He said the op is likely to be in June.
    Despite the obvious bone on bone in my left hip socket I still feel quite attached to it and wish there was a viable alternative to such radical surgery that would still allow me to do everything I had planned to do in my recent retirement, mostly, walking miles with my 3 labs and dancing in the local ladies Morris Dance side. Also, of course, helping out with my 5 grandchildren; 1 in Australia and 4 in London. I think I must ‘bite this particular bullet’ and just be grateful to the NHS for giving me the option to get my life back.
    Anyway, I just wanted to wish you both well and thank you, Sue, for writing the blog. Best wishes for your continued excellent recovery.

    • Dear Betty
      Thank you for your message. It is a difficult decision, and I wish you all the best in whatever you choose to do. You certainly have a lot to keep you busy once you recover. I can highly recommend the end result – being pain-free is wonderful. Good luck and very best wishes
      Sue

  4. Peter McCulloch says:

    Oh Dear! As a surgeon it always makes me squirm to hear this kind of story – and I have heard a lot. In one way I do understand how we can develop into the kind of creature represented by Dr B but in another I just can’t. There’s a big generational element – people like me were trained in an era of paternalism when we did the decisions, thank you – and to be fair social attitudes back then were different and lots of people were actually happy with that. But we should be able to be sensitive to what patients want, and if that changes we should be able to change. And there’s a big element that’s about the professional persona we are socialised into by our apprenticeship training scheme – learning at the feet of the master means that when we get to be the master we expect people to listen! This is a problem which I hope will fade away as more women come into the profession, as it strikes me as a very male hangup. Teaching doctors to trust scientific evidence rather than the pronouncements of their bosses or other experts is also a good antidote to the kind of thinking which leads to Dr B behaviour – but it’s not easy! And of course patients and doctors too often collude in perpetuating the myth of the Great Man. In a profession where people see us as master craftsman, we invest a huge amount of personal capital in our reputation for technical excellence. We love to believe we are exceptional, and in the absence of reliable data it has been pretty easy for us to do so until very recently. The fact is that most Consultants in UK hospitals can do a very good job for you. We have all done our “10,000 hours” and despite the very strong opinions of many patients (and their surgeons!) that their surgeon is by far the best, it is very difficult to demonstrate this once other factors have been accounted for. What we really need is a system where you are more or less guaranteed a good result. You should be able to regard the surgeon as interchangeable but ultimately reliable – just as you would the captain of your holiday flight. No one worries if the pilot takes ill and has to be replaced at the last minute, but they do if it happens to their surgeon. We should be aiming to end that. And we should expect that the surgeons’ “non-technical” skills are up to scratch as well – as your blog emphasises, that’s got as much to do with the patients’ feeling of confidence and well being as the technical side.
    Good luck with the op!

    • Hi Peter
      Thank you very much for taking the time to read my blog and to provide such thoughtful, considered comments. I have no doubt that your patients are very fortunate to have access to all your skills (technical and ‘non-technical’). Pleased to report all well and I’m bonding nicely with my new hip. Thanks again for your interest.

  5. Louise says:

    Sue, cousin-in-law (is there such a thing?) Louise here. Anne just told me about your blog.- and I hear you are coming home soon. Get better soon and have a peaceful Christmas at home being waited on hand and foot (hear that, M, H and A?) When I broke my foot three years ago I was totally unprepared for how helpless and dependent I became.
    Great to see the Ask 3 Questions approach being advocated, but how sad that the reality still falls so horribly short, I can’t tell you how many people I am going to alert to your blog, but they include some of the people behind Ask 3 Qs at Cardiff, colleagues at Oxford who are planning a grant application on how to make surgery more evidence-based, and various people involved in shared decision-making and health experiences. You know what this means, don’t you? You’re going to have to be interviewed for http://www.healthtalkonline.org!

    • Hi Louise. Lovely to hear from you. Thank you for initiating a whirlwind of interest and comment on my blog. Up until your efforts, I was sure it was just my mother who was reading! It seems the post on choosing a surgeon hit the patient experience zeitgeist-o-meter full-on. Look forward to seeing you in the New Year x

      • Wendy says:

        I had a R THR on 13 December 2013, Friday 13th!
        It was only 5th November 2013 I had my appointment with the Consultant and he was very professional but friendly.He recommended that I did have the op but at the same time the decision was entirely mine and seeing my reservation he remarked that life is all about risk and that I could easily have an accident going home from this appointment in my car.
        Knowing my husband would be cross if I said no!, I agreed to go on his list which he said would probably mean having it around the end of February, so it was a shock when I was phoned to come in for pre-assessment on December 2nd.

        As my Consultant had done his medical training at Birmingham University I did mention that my sister and brother had both trained there too. My sister really wanted to do surgery and gained honours in that subject but at that time only 8% of medical students were women ( more like over 50% today)and to be a surgeon means huge commitment, the right partner and a struggle to combine family life.
        My Consultant agreed and said his wife was an engineer and they both had demanding careers and found it difficult to be equal about sharing their childcare.

        My sister specialised in Psychiatry (couldn’t be more opposite to surgery!) and still works part time in her retirement, my brother became a GP.
        They both shared a cadaver with five other students on starting at aged 18/19 yrs, as medical students did then but today the training has changed immensely which my Consultant rued as he believed anatomy is crucial to understanding how the body works subject to ageing, disease and stresses which in Othopaedics is very much the case.

        I chose to be fully awake for my op ( having already had a caesarian under epidural helped) and my anaesthetist was lovely, he even took a photo with his i pod behind the screen to show me and also showed me my now removed femoral head and pointed out the damage on it which was very reassuring my still silently questioning myself whether I was doing the right thing though somewhat rather too late at this point!
        I share many of your experiences of recovery but thankfully was not in a ward full of patients shouting though I did have that experience a few years ago when I fractured a finger.

      • Hi Wendy
        Thanks so much for sharing your thoughts. I’m sorry for the delay in replying. It’s great that your surgery went so well. Best wishes for a rapid and full recovery!
        Sue

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