Editorial: Mid Staffordshire public inquiry: will patients' voices be heard?

The impact that the public inquiry into Mid Staffordshire NHS Foundation Trust will eventually have on patient safety in England still remains to be seen. Whilst the Government made an initial response to the inquiry report in March 2013, it will not respond in detail until the autumn. In the meantime, the extremely well respected expert in patient safety from the United States, Don Berwick, has been commissioned to review the report and make recommendations about the recommendations as well as his own on how the vision of “zero harm” could be achieved in England. One question that arises for me is the wisdom of the terminology of “zero harm”. In such a risky and complex endeavour as healthcare, there will always be an element of avoidable harm. Doing everything possible to prevent avoidable harm is of course imperative. However, I would prefer an approach which adopted “zero tolerance” of unsafe or unethical care and which also focussed on achievable positive outcomes. “Save ‘x’ number of lives” is an approach that has been successful in several campaigns. Another obvious question is why, after spending over two years and £13 million on the inquiry to come up with the recommendations after thorough examination of the evidence from all sides, and in a completely transparent process, should we be giving such influence to a review which could come up with conflicting recommendations and the process of which is far less thorough and transparent? The Berwick review will report by the end of July 2013. A search of the internet will reveal very little about the actual terms of reference for the review or how and why members of the advisory committee were selected. Ironically, two of the biggest themes of the Mid Staffordshire inquiry were the need for more openness and transparency and also the need to give patients a more powerful voice. So how is the voice of patients to be represented in this review? The Mid Staffordshire inquiry made a point of giving core participant status not only to the group representing patients and families at Stafford – Cure the NHS – but also to Action against Medical Accidents (AvMA), as the national patients charity specialising in patient safety, and the Patients Association, a more generalist charity representing patients nationally. This meant that the voice of patients was extremely prominent both in providing evidence to the inquiry and in advising the chairman of the inquiry. The result was a set of recommendations which more than any other report on the health service which I have seen, reflected the perspectives and priorities of patients. The Berwick review on the other hand has included just three individuals to provide a patient/carer perspective. Whilst the three individuals are all excellent people with valuable perspectives borne out of their own experience, they do not represent a movement. They do not have the experience of over 3000 cases a year for decades which for example, AvMA has. Unlike the clinical and establishment members of the advisory committee, they do not work on patient safety full time and would not describe themselves as ‘experts’. Yet, a conscious decision was taken to exclude patients’ organisations which could have been in a better position to have debated the issues on the same level as the other ‘experts’, and with an evidence base to call upon. My fear is that as a result a report which may have a huge influence on whether key recommendations which came from the Mid Staffordshire inquiry are implemented may be fundamentally flawed and lack public confidence. I have no reason to doubt Don Berwick’s integrity at all, and when I had the opportunity to ask him about his remit publically at a conference, he gave reassuring commitments that the report he will produce will at least be free from any political influence. Whilst not wielding any actual power and acting in an advisory capacity only, he apparently has carte blanche to say whatever he, with the advice of his advisory committee, wants to say. The problem is that a trick has been missed to give patients a powerful voice in the process and allow the perception (at the very least) that the Government is using this process to make it easier for it to ignore some of the recommendations from Mid Staffordshire. At the same conference, there were very brief presentations from various sub-groups of the advisory committee and questions for the audience (which was comprised almost entirely of people working in the NHS). There is no similar event planned to engage with patients and/or patients’ organisations. Even at this event, the amount of time and manner of feedback was very limited and relatively superficial. I was particularly worried about the way that one of the sub-groups put its questions to the audience. (This was the group grappling with the thorny issue of individual criminal liability being introduced for deliberate misleading or cover-ups in cases of serious harm or death, as recommended by Robert Francis QC, chairman to the inquiry). It was very clear that the underlying assumption was that Robert Francis was wrong to recommend this; that there no real benefits to doing it; and Peter Walsh, chief executive, AvMA