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Presentation by Professor Niall O’Higgins at the European Breast Cancer Conference, Barcelona, March 26th 2010 (EUROPA DONNA Teaching Lecture)
Breast Unit Implementation-A national response
I am very pleased to be here. Firstly, I appreciate the honour that Christine Murphy-Whyte and Europa Donna have done me in inviting me to speak. Secondly I value the opportunity to speak on a subject that has been a professional pre-occupation for 50 years since I was a medical student. Thirdly this is a good forum to express admiration for the powerful impact for good that has characterised Europa Donna since its foundation.
I thought it would be of interest, and perhaps of value if, using Ireland as the model I told the story of the efforts to develop a national system of high quality care for women with breast complaints, the symptomatic service, and those without breast complaints, the screening service.
Slide 1. Ireland is a small country. It is an area approximately of 27,000 square miles, has a population of just over 4 million people and has a population density of 150 people per square mile.
Slide 2. Until we started the first Breast Clinic in Ireland in 1979, all patients with breast complaints were seen in general surgical clinics. Within a matter of months, however, it became clear that the standard of investigation, communication and specialised medical and nursing care appealed to patients and to referring doctors. There was some opposition to the establishment of a specialised clinic since all general surgeons considered themselves trained and competent to investigate and treat patients with breast complaints. The clinic, initially conducted over 2 to 3 hours, soon became relatively enormous with over 100 patients attending. We soon had a situation where the clinic starting at 0830 would continue non-stop until 1830. The number of patients, coming from all over the country, soon outstripped our ability to cope. Although seen within a week of referral, we were unable to see people within an hour of their arrival to the hospital. As has been discovered at the commencement of most specialist breast clinics, we could not control the number of patients arriving. The clinic soon became overwhelmed by the worried well who kept returning for repeated visits and examinations. It was difficult to discharge patients back to their GP. They preferred to return to the clinic, in spite of a wait often of several hours, than to see their general practitioner. The GPs preferred to send them back because they did not want to take responsibility for continuing care. The junior doctors in the clinic preferred to give the patients follow-up appointments because of medico-legal fears of missing a cancer.
Slide 3. Throughout the 90s evidence was accumulating about increased survival and reduced morbidity for patients treated in specialised units by multidisciplinary teams. Further information indicates formidable inequalities of access to care in many countries. Public concern was expressed about missed and delayed diagnosis of cancer. The case for Breast Units had become irresistible.
Slide 4. At that time in Ireland, patients with breast conditions were being treated in 41 public hospitals and in approximately 12 private hospitals.
Slide 5. Shortly after his appointment in the mid-1990s the then Minister for Health established a National Cancer Forum. This Forum set up a group of three people to assess breast care in the public hospitals, to report findings and to make recommendations. The group visited each of the hospitals, analysed arrangements and made recommendations.
Slide 6. The report was published in 2000.
The tour of hospitals was an interesting and an educational experience and led to some startling, but not unexpected, findings.
Slide 7. There were very few breast clinics. Surgeons carried out a wide variety of procedures for invasive cancer. Axillary surgery was at best haphazard. There was a high percentage of open surgical biopsies for benign and malignant disease and wide variation in the standard of mammography and pathology services. Multidisciplinary meetings were distinctly uncommon. There was no agreement on the diagnostic methods of choice, mammography was not easily accessible and there was no surveillance over maintenance of standards of equipment or over mammographic techniques. Mammograms were read and reported by all consultant radiologists. Collaboration between surgeon and pathologist about resection margins was unusual. There was little or no quality control, no audit and no information about outcome. Care was ad hoc. In short, the care of women with symptomatic breast disease was a lottery.
Slide 8. It was recommended that 13 Breast Units be established, each based on a population of around 300,000 in accordance with the Florence Statement of 1998. Each unit was to be staffed by a full range of breast specialists. Rigorous clinical and administrative audit would be required and a structured national network should be put in place in order to allow for performance of each unit to be amenable to comparison and external examination.
Slide 9. The recommendations were accepted by the Minister and incorporated in their entirety as government policy. Assurances were given that funding was “available”.
The recommendations were supported by clear international evidence, strong public support and an increasing awareness of the drive in other countries for a breast screening service.
Slide 10. Breast Units were to be based on the Health Boards. There was uncertainty about a Unit in the north part of the country and it was suggested that a single centre between the Republic and Northern Ireland would be justified but, because such a Breast Unit would involve two jurisdictions, a decision at the highest political level would be required.
Slide 11. At last, all seemed well but…
Soon afterwards the small group took to the road again, this time engaging with presentations and discussions with the Health Board authorities around the country. Chief among the criticisms of the health board system was that of political patronage. Over half of the members were appointed by local or national government and the nominated members were often aspiring members of political parties. Inevitably there was poor accountability and service provision due to the politicised nature of the system. Decisions were made on political grounds rather than clinical need. The Health Board system has since been reformed.
Slide 12. It soon became clear that in most areas there would be considerable opposition and resistance to change if it affected local services.
Local politicians were placed under pressure not to allow the smaller hospitals to be threatened with closure or downgrading. A perceived threat to local emergency or cancer services causes great anxiety among communities. People started marching and demonstrating in the streets. Protests outside government buildings were frequent. The medical profession, while accepting the demonstrated value of specialist breast centres, tended, quite understandably, to resist change when their local services were being challenged with reform.
High-ranking politicians and health administrators failed to engage with the medical staff. Uncertainty reigned. Morale was low. Political will seemed to evaporate. National politicians drew back.
A general election campaign in 2002 drew further attention to the issue and stimulated a denial by government that there was any problem other than some “organisational delay.”
Slide 13. Meanwhile, in stark contrast was the start and evolution of the National Breast Screening Service. Initiated in 1998, the high-quality screening programme was making good progress.
Slide 14. From its inception, the screening programme was planned carefully. The planners got much information and advice from visits to centres in the UK, the Netherlands and Sweden. Quality measures were incorporated at every stage of the screening process. Implemenation was gradual, in two stages. A major difference from other programmes was that it was decided that screening should end, not at diagnosis, but upon completion of the primary treatment, including surgery and radiotherapy.
Slide 15. Screening commenced in 2000 and was extended nationally in 2007.
Slide 16. There were several reasons why the screening programme thrived. It was new and, as such, was not burdened by any pre-existing arrangement. It was therefore non-competitive and non-threatening. Crucially, it had independent funding and was quite separate from the beleagured symptomatic service and from other hospital services. It commanded strong public support. It was made free of charge to all women in the screening age range.
Slide 17. Screening was kept under tight clinical and administrative control. Specialists in screening were appointed. The arrangement whereby the screening programme continued until the end of primary treatment made it attractive to patients and doctors.
Slide 18. A Women’s Screening Charter was developed, European guidelines for mammography were followed, a national training centre for mammographic radiographers was established. Ours was the first national programme to be fully converted to digital mammography.
Slide 19. By the end of 2009 more than half a million mammograms had been carried out on 270,000 women and 3,500 cancers had been diagnosed.
Slide 20. 2005 saw the appointment of a new Minister for Health. She recognised the anomaly that existed in breast services-an excellent system for patients who had no symptoms and a poor service for the worried women with breast complaints. She established a committee to draw up comprehensive guidelines for quality assurance for symptomatic patients. She launched a Cancer Control programme.
Slide 21. The guidelines included clinical, administrative and technical recommendations. They were immediately accepted and incorporated in to the newly-appointed Health Information and Quality Authority.
Slide 22. In 2006 and 2007 remarkable changes began. Nationwide, eight cancer centres were designated. The number was based on a population base of one unit per 500,000 rather than 300,000 that had been proposed in the Florence Statement. A Director of Cancer Services, Professor Tom Keane from Vancouver, was appointed to implement the neglected recommendations of 2000 and also the recent proposals for quality assurance.
Slide 23. He was to establish the 8 Breast Units and a satellite unit. This arrangement was to be the lead model upon which other cancer services would be developed. develop.
Slide 24. As was expected there was political fallout from the decision that cancer services were to be restricted to eight hospitals. Feelings ran high. A minister resigned. People took to the streets again. There was localised medical opposition. But the Minister for Health and Professor Keane remained firm. In addition widely-publicised errors in the diagnosis of breast cancer convinced all that a better system was both necessary and urgent. The role of Europa Donna was most influential.
Slide 25. Europa Donna was steadfast in advocating improvement, and consistent in its statements in support of Specialist Breast Units. It avoided condemnation or strident comment.
Slide 26. In the 1990s, breast surgery was carried out in 41 hospitals in Ireland and in June 2007 in 33. By September of 2007, the number was down to 20 and later 16 and 10. By the end of 2009 when Professor Keane completed his term of appointment the number was down to the nominated eight centres. These centres will treat all cancers, the breast model to be followed by others, such as colorectal, prostate, lung and pancreatic cancer
Slide 27. The concentration of work on the eight centres imposes its own problems. The referral rate is high. Between January and July of last year, 16.5 thousand women were seen at the Breast Units and 957 cancers were diagnosed. The benign to malignant ratio varied from 13 to 1 to a huge 37 to 1 in the satellite centre.
Slide 28. Protection of quality during change requires particular vigilance. For diagnosis continual effort must be maintained to improve precision while minimising error. Multidisciplinary meetings must take palce for each patient at two points-the time of diagnosis and the planning of post-operative treatment. Clinical, administrative and technical accountability must be sharp and keen.
Slide 29. Where do we stand now with the symptomatic service?
Slide 30. Ninety-eight percent of urgent referrals are seen within two weeks and a pre-operative diagnosis of cancer of greater than 95% has been achieved in all centres.
Slide 31. Diagnostic imaging is carried out at the first visit in over 90% of cases in most centres, but 4 are still falling short of this target.
Slide 32. Greater than 95% compliance for pre-operative axillary ultrasound is attained in six of the eight centres.
Slide 33. The 90% target for operation within 20 days of diagnosis has not been reached in four of the Units. One falls short by some distance because the hospital was awaiting the appointment of a specialist surgeon at the time.
Slide 34. Waiting times for definitive surgery are now, with one exception, reaching or exceeding guidelines.
Slide 35. Turning to the screening service, the situation is very good.
Slide 36. For the first screen, targets are achieved or exceeded in all with the exception of the recall rate which, at 7.2%, is above the target 0f 7%. The diagnosis of DCIS cases, as a percentage of all cancers, the detection rates of invasive cancers and the percentage of invasive cancer less than 15 mm all surpass the targets.
Slide 37. Similarly, in subsequent screening, all the performances indices- recall rates, benign open biopsy rates, cancer detection rates, percentage of DCIS over all cancers and the percentage of invasive cancers less than 15 mm- have been exceeded.
Slide 38. A pre-operative diagnosis was achieved in 90% of women in the first screen and 96% in subsequent screening.
Slide 39. The current situation in Ireland is that we have structured, comprehensive national symptomatic and screening programmes for which there is tight central audit of the clinical, administrative and technical elements in each centre. We stand on the cusp of high quality and excellence is in sight.
Slide 40. What information have we gained from this prolonged process? For the medical profession, it is clear that doctors must lead change. If the profession will not lead it will be led. Others in medicine must support change. I must pay tribute to my surgical colleagues in Ireland who have accepted the reforms, sometimes with great, and understandable, difficulty, especially in situations where they had invested much time and effort in attempting to develop local services. Surgeons, while strong in their opinions and beliefs, are genuinely amenable to be persuaded by evidence and they are uncompromising in supporting high quality. They deserve much credit.
Slide 41. The low volume surgeons have stopped. Ongoing training of cancer specialists must become a specified task of postgraduate training bodies. Now that Eusoma has a system of accrediting Breast Units, it should, in my view, organise a system of exchange of specialist trainees, as well as clinical and research fellows and staff members. If each accredited centre were to preserve a single training position for a clinician or researcher from another country, an interactive rotation programme might be established. In this way, a collaborative network of expertise can be developed throughout Europe. Nothing but good can come from such an arrangement.
Slide 42. Where are politicians in medical reform? Are national politicians leaders or followers? Of course, they should be both, but too often, even when faced with convincing evidence and with available funding, they fail to demonstrate courage to implement reform because it may be unpopular. Local politicians, dependent on local votes for re-election, think in local terms. They are fully in favour of reform, provided it does not affect their constituency.
Slide 43. What has this process taught us about the view of the general public? The people want better cancer services. They are willing to travel to specialist centres, particularly if by so doing, there is likely to be a survival advantage. They are intolerant of incompetence, especially in cancer services. They understand that cost is an issue. They want explanation.
Slide 44. What have we learnt about the media in this saga? Sometimes they feed off each other. A piece on radio in the morning will often appear in the newspapers in the afternoon. They sometimes rush to judgement and may display a surface, rather than deep, understanding of issues and events. The media are, however, quick to interpret and respond to the mood of the public and can be powerful allies for effective change.
Slide 45. What of advocacy groups? They should all be like Europa Donna. They have tended to underestimate their importance and their value. They need to be co-ordinated so as to strengthen their voice. They should be integrated with scientific and clinical conferences, as is the case in the European Breast Cancer Conference.
Slide 46. What are the drivers and engines of change? Simply, all the Es-evidence, energy, effort, education, explanation and enthusiasm.
But the Es require Ps too
Slide 47. They are patience, persuasion and, above all, persistence and perseverance.
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