Ms Margaret Murphy:

I thank members for facilitating me. In my opening statement I referred to the Michigan experience. Back in 2004 the University of Michigan health system adopted a full disclosure policy, not necessarily as a result of legislation. In its words, it moved from a deny-and-defend approach to "apologise and learn when we are wrong, explain and vigorously defend when we are right and view court as a last resort". As a result, between August 2001 and August 2007, the ratio of litigated cases were reduced from 65% to 27%, average claims processing time was reduced from 20.3 months to eight months, insurance reserves were reduced by two thirds and average litigation costs more than halved. Savings were then invested in patient safety initiatives. Not only is it the right thing to do, but there is a good business case for it, too.

The United Kingdom has enshrined a duty of candour in legislation. This statutory duty came in at the end of 2014. We are hearing anecdotally that it is having a positive effect on changing the culture in the health system. It is appreciated that changing culture does not happen overnight. However, having the duty of candour in place certainly helps focus attention. For decades we have campaigned for a statutory duty as opposed to just guidance or contractual arrangements. Small parts of the medical profession have resisted, fuelled mainly by warnings from medical defence organisations that it would have unintended consequences, make matters worse or drive reporting underground. There is no evidence that unintended consequences have resulted in the United Kingdom. All of the major organisations now accept statutory duty.

The arguments for and against duty of candour were meticulously considered as part of the Mid Staffordshire NHS Foundation Trust public inquiry which came down firmly in favour of introducing a statutory duty. It is now one of the fundamental standards for health and social care providers in England, underpinned by the United Kingdom's Care Quality Commission statutory regulations.

The authorities in Scotland recently carefully considered whether to introduce a statutory duty and, following consultation, the Scottish Parliament passed legislation to bring such a duty into effect. It should become operational in 2017. Wales and Northern Ireland have signalled their intention to do likewise. There are operational lessons to be learned from the United Kingdom and we would have to consider these.

The Canadian Patient Safety Institute is compiling a dossier of how the disclosure debate stands in all of its provinces. The Government of Saskatchewan passed legislation requiring the reporting and investigation of critical incidents in health care as of September 2004. The Manitoba Government passed legislation in 2005 to amend the Regional Health Authorities Act and there are other examples. The amendments in legislation required that critical incidents be reported. If a critical incident occurs, the regional health authority or prescribed health organisation must ensure appropriate steps are taken to fully inform the individual, including the patient, of the facts of what occurred, the consequences of the critical incident as they become known, the actions taken and the actions that will be taken to address the consequences. A complete record of the critical incident must be made promptly and must be accessible to the individual in question. Disclosure is not an event but a process.

This approach supports staff, especially front-line staff, to do the right thing because it is what they must do. I will give an example in respect of the registrar who looked after Kevin who clearly accepted a significant degree of responsibility for the sad outcome. I had a chance encounter with him while exiting a lift six weeks after Kevin's death. As he made to enter the lift, our eyes locked and he was clearly trying to place me. All I said to him was that I was Kevin Murphy's mother. The man's face blanched and he blurted the out words, "I did not think he would die." He backed out of the lift and ran away down the corridor. We had just come from a very unsatisfactory encounter with a head of department and I turned to my husband and said, "Oh my God, they have abandoned us but they have abandoned him too."

A substantial amount of work needs to be done on this issue. I will explain the abandonment we experienced when we met the individual in question. At a significant point in Kevin's care, crucial blood tests were telephoned to the general practitioner's surgery. These were written down on a Post-it note by the practice nurse who, as a result of the conversation, offered the correct diagnosis to the general practitioner. However, the general practitioner came up with his own differential diagnosis and when writing the letter of referral to the hospital filtered the test results, only including those elements that supported his diagnosis and omitting the critical calcium reading, which was the issue. As a consequence, this reading was not seen by the various people looking after Kevin. When we met the head of department he showed me the Post-it note. This is how patients are treated in the aftermath of events. He asked me what I made of it and I said there was a very high calcium level at 5.73 mmol/L where the normal range is between 2.05 and 2.75 mmol/l. He said that even if the reading had been seen by his consultant colleague, it would not have meant anything to him. I asked why this would have been the case and he replied that the reading was not written as he would write it. I asked to see the note again. It used the term "cal" for calcium, "sod" for sodium and "pot" for potassium. I asked him whether he was saying that because it was not written in scientific notation, it would not mean anything to someone like him. The man actually replied "Yes". It was at that point that I lost faith because I identified a reluctance to be decent, honest and humane and to have compassion for heartbroken people. That is what drove us down the road of litigation, which is a road that patients do not go down.

Monetary compensation was never an issue for us as a family. A sum of money does not exist that would equate to my Kevin. We could not imagine any circumstance in which we would derive a benefit or pleasure and, as a consequence, we donated the settlement figure to two charities, Bóthar and the Make-A-Wish Foundation. I am totally convinced that proper disclosure and honesty would have been far more beneficial to us and the clinical staff involved. Instead of focusing so much energy on defending a lawsuit, this energy could have been invested in identifying improvement measures and putting them into place. Perhaps one of the first things we have do is examine why essentially decent and professional people often behave in a very inhumane manner in the aftermath of adverse events.

I repeat my plea for legislation to be introduced because legislation would make reporting happen. We do not need wriggle room because leaving wriggle room would mean people would avail of it. I have made copies of my expanded statement for each member should they wish to read it. I thank the committee for its indulgence.