John Crown (Independent) | Oireachtas source

I welcome the witnesses and beg their indulgence if I sound tired and cranky. It recently dawned on me that I am well into my 22nd year of being back in Ireland and I am still trying to grapple with the issues arising in regard to the common disease of cancer. We are not doing very well with the common diseases and, while that does not mean we should not try to deal with the rare diseases, I caution the witnesses on a certain issue of prioritisation. What made the difference in cancer care in Ireland was not the bureaucracy called the national cancer control programme but the now Minister for Finance, Deputy Noonan, who said in his first speech as Minister for Health in 1995 that if one of his relatives had cancer he would not allow him or her to go to certain hospitals in this country. I gently remind him this was an ever so slight plagiarism of something I had said the previous year but I was honoured to be plagiarised in that manner. He also spoke about appointing cancer specialists. That is what made the difference. Cancer mortality rates started to improve, particularly in breast cancer, which was probably the area that was most deficient in terms of treatments not being made available in Ireland. The national cancer control programme had nothing to do with these improvements. It streamlined certain procedures but it did not materially affect their outcome.

I do not want the witnesses to take this the wrong way but somebody coming away from this meeting might get the message that the country with the smallest number of paediatricians, adult and paediatric neurologists or adult and paediatric dermatologists, nearly non-existent paediatric endocrinologists, despite our obesity epidemic, and very few adult endocrinologists needs to prioritise the management of uncommon diseases by setting up a new bureaucracy and a registry. We may need them but we are not going to fix the problem until we grapple with the fundamental structural problems of Irish health care, which are no closer to being fixed than when I first started to point them out more than two decades ago.

I have not formally studied which places are most successful in dealing with individual rare diseases. Typically in the case of cancer, a leading medical school-based centre develops an interest in a programme and has sufficient resources and personnel to allow sub-specialisation to develop. This is unlike the situation in Ireland, where we expect paediatricians to look after asthma in children and then provide a specialist service to those with uncommon or rare diseases. We must also grapple with the fundamentally irrational nature of having six medical schools in a small population. That is twice the European average and approximately two and a half times that of the United States on a per capitabasis. None of them is remotely excellent. I can highlight individual cases of people who did brilliant jobs in difficult circumstances in terms of building internationally recognised units, but we do not approach the issue systematically.

I have to say something about the national centre for medical genetics because I have a dog in this fight. We use genetics services, primarily historic, for breast cancer patients where we notice a suspicious family history and want to find out if the patient has a genetic syndrome which would be relevant to the her health as well as to other members of her family in terms of early diagnosis or prevention of cancer. The reality is that we did not stop having a national genetics centre; we never had one. We had a very good academic centre that Professor Andrew Green, to his extraordinary credit, built mainly on the basis of research funding. It attracted very limited statutory funding. He and I had a gentle historical disagreement because we both applied for a research grant which ended up getting his unit up and running on a large scale. However, he has been providing a genetics service on a national basis without the kind of structure or ring-fenced budget that a national centre should have. When Crumlin was in its most recent paroxysm of financial turmoil, it re-examined the centre's catchment area. This has happened to me in St. Vincent's. I have been told over the years that I should not take patients from Galway because St. Vincent's was not a national centre for any of their cancers and they could instead go to their local hospitals. When I pointed out that the local hospital did not have an oncologist, the response I received was "tough". Doctors behaving ethically have had to overcome very unethical administrative impediments to providing services to patients. While there is much to be said for proper registration procedures and connecting to international networks to tap into expertise, it is also necessary to advocate for the reform of services, including the number of doctors and structures of medical schools.