Saturday, 16 January 2016

European Commission Initiative on Breast Cancer

Back in early December I attended the plenary of the European Commission Initiative on Breast Cancer held in the beautiful setting of Baveno on the shores of Lake Maggiore.  Throughout the meeting there was plenty of opportunity at the breaks for networking.

Following the welcome, a series of speakers set out the project's current position in relation to developing a Europe-wide quality assurance scheme, guidelines for screening and diagnosis and a platform for further guidelines to cover care from screening to end of life.  The initiative has wider implications as it will be able to be used as a template for similar projects in relation to other cancers and diseases.

Pathology issues played a strong part on the first day, stressing that pathology is about so much more than testing (important though that is).

After watching a beautiful sunrise over the lake from the balcony of my room and fortified by an excellent Italian breakfast, I approached Day 2 in eager anticipation.  For me the highlight of the morning was the series of country profiles in which speakers from Hungary, Malta and Norway gave a fascinating insight into three very different sets of issues, challenges and solutions.  Long travel distances are a problem in some parts of Hungary.  That is not a problem in Malta, with its small landmass, but low numbers make clinical trials difficult there.  Norway appears to have high rates of interval cancers because all are captured, and informed consent in data collection has been a problem there.

The afternoon consisted of a choice of parallel workshops followed by a guided poster tour.  I could quite happily have attended any one of the 4 workshops, but eventually chose Communication in Person-centred Services.  This workshop involved presentations from 3 speakers and a good deal of participant participation.  It came up with some catchy images, parallels and metaphors, to which I will return later.

The conference dinner was excellent and provided a good opportunity for more informal networking.

The last day started with a keynote looking at evidence from qualitative research in guideline development.  This included asking 3 questions of proposals:
          Is it effective and safe?
          Is it acceptable to patients and others?
          Is it feasible to implement?

After the keynote each workshop fed back on they sessions, which was an excellent opportunity to catch up on the other options I'd rather have liked to attend.  I was particularly interested in the 'Volumes' workshop.  There is some evidence for a volume effect, but not as much as in complex surgery.  And should it be the surgeon or the hospital/unit volume?  In their feedback, the group posed the question - what do patients feel about volume?  My answer to that was - for anything complex, I really don't want to be operated on by the chap who was once known to do the procedure with the textbook propped open before him.  I want it done by the woman who can do it in her sleep, regardless of how far I have to travel for that - provided that she isn't actually asleep at the time, of course!  For something more straightforward, generic experience is probably fine.

The closing presentations included one on equity of access to screening; one of methodological standards for guidelines; and my own presentation on involving patients and the public in the difficult decisions using the over diagnosis/over treatment issue for illustration.

An interesting question was posed in relation to personalised screening, taking personalised medicine to the pre-diagnosis stage.

The issue of palliative care and the need for this to be included was raised several times; years to live, not years to suffer.  Another point that came up several times was the need for whatever is agreed to be attainable by all and not just the richer European countries.

I said before that the Workshop came up with some good images and metaphors.  Several of these resonated with me, including the following:

Luzia Travado presented on psychosocial support and used the analogy that diagnosis takes you to a new country for which you don't have the map and don't know the language.  I can relate to that and was fortunate enough to find both map and phrase book, but not everyone does manage to find those vital tools.

Kathi in her presentation suggested that patients practice telling their narrative in 75 words to support quick, easy and efficient communication of the vital issues.  She also spoke about the internet as being the blockbuster drug in patient engagement in their healthcare.  This, of course, does raise the question of how engagement can be achieved for those without (for whatever reason) good internet access.  Kathi also referred to the e-patient - Empowered, Engaged, Equipped and Enabled.

It was an excellent meeting; realistic but optimistic.  The patient voice was welcomed throughout the plenary; Susan Knox of Europa Donna spoke in the welcoming session on patient expectations, the Communication workshop included the presentation from Kathi Apostolidis of the European Cancer Patient Coalition, and I presented in the last presentations.

It isn't an easy project, especially given the economic climate, but it is one that could deliver a good standard of care wherever you live in Europe.

Thursday, 14 January 2016

Another Milestone

I'm afraid that posters and Baveno are a bit delayed; this is a personal post following a much longer than usual appointments season.

This week, exactly seven years after I first met my oncologist to discuss radiotherapy and endocrine medication, I have been discharged from follow up and will re-join the National Screening Programme.

It has been a slightly strained appointments season this year.  Following my annual mammogram in mid November I was due to receive the results at my follow up appointment three weeks later.  However, this appointment was cancelled by the hospital due to planned strike action by junior doctors.  The re-scheduled appointment was for five weeks after the mammogram and while happy to wait for the appointment I viewed it as an unacceptably long time to wait for the results.  It was further complicated by the fact that I couldn't make the new date as I had a meeting I really did not want to miss and had spent the last eleven months working my diary around keeping the original date free.  Eventually I got another appointment, which was for eight weeks after the mammogram.

After something of a struggle I managed to get the results by phone from one of the unit's breast care nurses, who clearly did appreciate my point about the length of the wait.  However, I do find it worrying that she appeared to be in the minority and the unit as a whole didn't appear to acknowledge that leaving me waiting eight weeks for the results was not acceptable.

That aside, it was a good appointment and after I made my points I reviewed with my consultant my diagnosis, treatment and notes in addition to the usual examination.  All was fine and I'm now discharged, with thanks from me to him for his neat surgical work, his good wishes to me and a friendly handshake.

It feels a bit odd but strangely liberating.  For the last seven and a quarter years I have never been longer than a few weeks without being in possession of a hospital appointment letter or two and with the second Tuesday in December booked.

Obviously I'm not fool enough to think that this actually changes anything.  I'm fully aware that for ER+ breast cancer the risk of recurrence remains at 10, 15, 20, 25 etc. years after treatment and the "all clear" beloved by the tabloid press is a myth.  Side effects can linger and lymphoedema lurks, but follow up won't actually prevent any of that.  It is time for me to take over the responsibility for monitoring my own health.

I walked out of the hospital with a smile on my face, a feeling of satisfaction and the memory of the words spoken to me by an excellent oncology registrar when I finished radiotherapy, "You have done well."

At Christmas my brother gave me the CD 'The Race for Space' by Public Service Broadcasting.  One track is entitled "Go" and addresses the Apollo 11 lunar landing from the mission control side, featuring the Go/No Go calls of those responsible for various areas.  As I drove home from the hospital I listened to this, with the line "Surgeon - 'Go'" taking on a very personal meaning.