Success and succession at AvMA: 40 years of minding the gap in patient safety and justice

This editorial marks an important occasion for Action against Medical Accidents (AvMA), the path-breaking charity for patient safety and justice. The timing is noteworthy in two respects. First, it is their 40th anniversary as a charity. They may have been the first patient organization focused on patient safety and they have played a significant role in the birth and raising of the patient safety movement, both in the UK and worldwide. ¹ Second, Peter Walsh, who has served as Chief Executive for 20 of those years, is stepping down. The Journal has been published in association with AvMA for its entire existence, so these are seismic events for us.

We should begin with personal thanks to Peter for his partnership with me over the five years that I’ve led the Journal.

I first met Peter in London in November, 2010 during the relaunch of the NHS policy of Being Open about medical errors. The policy, originally adopted in 2005, promotes “greater openness with patients and families when things go wrong,” stating that “sorry is not an admission of liability and it is the right thing to do.” ² I had assembled a group of international experts for a day-long meeting on open disclosure of adverse events. Innovative policies and practices being implemented in Australia, New Zealand, Canada, and the US were shared with NHS leaders and other key stakeholders. During the discussions, I witnessed Peter's passionate insistence on justice for injured patients. In subsequent meetings, he campaigned earnestly for an additional legal “duty of candour” to disclose in the UK. He was justifiably proud when the efforts of AvMA helped to pass this legislation in 2014. ³

When I took over as Editor-in-Chief of the Journal in 2018, Peter had been in place since the inception of its predecessor Clinical Risk. He was a gracious host, helping to bring about a warm handoff as we transitioned to a new name and a more international focus. Since then, he has helped the Journal deliver medico-legal content, while keeping the important perspective of patients.

Congratulations are also in order for AvMA, which can notch up several achievements. It is evident that AvMA helped create the market for malpractice claims in the UK, providing structures and support to both injured patients and plaintiff's attorneys. This has contributed to an increase in malpractice claims. Although not all would view this as an unmitigated good, it has increased the number of injured people able to receive needed compensation. In addition, it promoted the uptake of clinical risk management in the NHS.

AvMA has long provided a unique resource to the community in the form of a helpline for patients who have been injured by health care. ⁴ Services include free support and advice to callers, as well as the handling of more complex casework and inquests. In a complex healthcare system, this service has been a lifeline for patients and families who don’t know how to raise concerns, or who are seeking explanations for what happened in their care. It helps them navigate the confusing processes for claiming compensation. AvMA has also produced invaluable self-help guides, available online. ⁵

In addition, AvMA has campaigned for changes in legislation and legal procedures to improve patients’ access to justice. Notable successes included the statutory duty of candour, noted above, which was implemented by the NHS in 2014. ³

The combined force of these efforts has been to increase awareness of the problem originally referred to as medical accidents, and the development of the field of patient safety. Recent collaborations have focused on influencing policy change, ensuring that patients and families are at the heart of any investigations into unsafe care, and that physical and emotional support are available for all when things go wrong.

Groups like AvMA have value in improving patient safety and the quality of care. In discussion with Helen Huges, Chief Executive of Patient Safety Learning, we reflected on the purpose and value of patient safety charities and not-for-profit organizations.

These organizations can channel and amplify the patient voice. The patient perspective is needed to influence politicians, policy makers, and organization and systems leaders to drive safety improvements, and influence awareness raising campaigns. Patient focused organizations can highlight specific services where there is avoidable harm that is not being addressed. In recent years, this has included injuries from pelvic mesh implants, pain from outpatient hysteroscopies, and maternity service failures.^6–8 In the UK, many public inquiries that have highlighted appalling levels of avoidable harm have been directly commissioned due to tenacious and committed patients and families. These individuals demanded answers as to why harm occurred, and changes to prevent future harm so that others would not suffer as they had. Patients want insights from their personal tragedies to inform broader learning and change.

There are now individuals, charities, not-for-profits, Facebook groups, and community groups around the world working to hold their healthcare systems to account. Specifically, they want to ensure that recommendations from investigations and inquiries lead to service redesign and reductions in avoidable harm.

Patient organizations can help healthcare organizations work more effectively. At the heart of every healthcare system is the need to deliver safe and effective care, to ensure that patients and families are empowered and engaged. Patients who are listened to and have their information needs met are better partners in their care. Patients who are active in their care and shared decision making have better health outcomes, and safer care. For example, The Patients Association in the UK works tirelessly in partnership with the NHS, statutory, and voluntary organizations. ⁹ By ensuring that services are designed and delivered through equal partnership with patients, it helps assure that everybody can access and benefit from the health and care they need to live well. It works with patients directly as members and supporters, and those who benefit from their help and advice services. It also speaks to government, the NHS and other stakeholders about patients’ priorities and concerns, to ensure the patient voice is heard and acted upon.

Patient organizations can also support patients and families. They can provide resources that the healthcare systems fail to provide—and might even fail to recognize. They can provide a safety net and provide support when things go wrong.

There are a number of other notable examples. The International Alliance for Patient Organizations (IAPO) has created strong networks of patient-led organizations, promoting the adoption of good practice, equality of access, and safe care. ¹⁰ IAPO works to promote patient-centered healthcare around the world with over 300 member organizations from 71 countries representing 50 disease areas. Their vision is to see patients placed at the center of healthcare. Their mission is to help build patient-centered healthcare worldwide.

Since it was founded in 2005, the WHO Patients for Patient Safety (PFPS) program has flourished to support the voice of patient campaigners. ¹¹ I was privileged to attend the second meeting of PFPS in Dublin in 2007. Members of the group were still flush with the novelty and excitement of their inaugural workshop held in London. Susan Sheridan was their external lead, and like most of the participants, her family had been harmed by health care. However, the mood of the participants was buoyant. Participants, experiencing for the first time a sense of agency as patients to improve health care, were sunny and energized.

Although I didn’t realize it at the time, Peter Walsh was a founding patient safety champion at that PFPS first meeting in London, and AvMA was entrusted with disbursing funding to UK members. Today, PFPS helps to support the WHO Global Patient Safety Action Plan. ¹² They are committed to the value that “patient engagement and empowerment is perhaps the most powerful tool to improve patient safety.”

And there is another, young non-profit pioneering its own way in patient safety—Patient Safety Learning. ¹³ Unlike the 40-year-old AvMA, Patient Safety Learning is not yet four years old. Some might ask: why was this charity established? Why is it needed when the NHS has a National Patient Safety Strategy, an enviable infrastructure of organizational patient safety specialists, and a commitment to deliver new approaches to incident reporting and investigation? The answer is, despite best endeavors, health care systems are not making the transformational change that is needed to address the scale of avoidable harm. Patient Safety Learning felt there was insufficient effort being taken to drive system change at policy level, and share widely the knowledge of risk and good practice for safer care. There is also an unmet need for “how to” tools to help organizations operate an effective safety management system with patient and staff safety at its core.

Patient Safety Learning felt there was a voice missing in health care. Part of its mission is to “listen to and promote the voice of the patient safety front line - patients, families and staff.” It enables leaders to better understand the “work as done” reality of healthcare, not just the “work as imagined” perspective of large health care bureaucracies. It's part of “speaking truth to power” which is so important for a just culture and for advocating for system change, locally, nationally, and globally. It also provides the hub, a free, award-winning platform to share learning for patient safety. ¹⁴ This offers a powerful combination of tools, resources, stories, ideas, case studies, and good practices to anyone who wants to make care safer for patients. Its communities of interest give people a place to discuss patient safety concerns and how to address them.

In this issue, Peter Walsh provides his irreplaceable perspective on AvMA after 20 years in the post, on changes in patient safety over that period of time, and the role that AvMA has played. ¹⁵ He emphasizes the crucial importance of providing a strong and credible patient voice.

Dr Christopher Sirrs provides a detailed history of AvMA in the context of clinical risk management in the NHS and UK. ¹⁶ He situates his article on the background of the malpractice “crisis” of the 1970s and 1980s, the rise of consumerism healthcare, and barriers to justice faced by patients following an adverse event. He argues persuasively that AvMA has been a key stakeholder in the development of risk management and the patient safety policy.

John Mead from NHS Resolution is a regular contributor of settled UK medicolegal cases to the Journal. As usual, this sad case of a patient elopement was interesting and instructive. ¹⁷

We look forward to continuing our partnership with AvMA on the Journal, especially as Paul Whiteing joins AvMA in December 2022. He will overlap briefly with Peter Walsh to effect the kind of smooth handoff that we know is important in healthcare. Paul's background as an ombudsman, skilled at leading teams responsible for resolving disputes between financial business and customers, provides useful preparation for leading AvMA.

What should be AvMA's role in the future? Is it possible that they could ever solve themselves out of a job? Patient safety has grown into an undisputed element of the quality of medical care, as well as a scientific field in its own right. ¹⁸ The rebranding of this journal from “Clinical Risk” to “Journal of Patient Safety and Risk Management” is a reflection of this. It is well accepted that patient safety and patient harm are both the product of the complex and multi-level system of care. However, much more work is needed to balance the imperatives to improve systems, and to provide individual patients with care that is fair and just. And the role of legal remedies to patient harm remains contested.

It is likely that AvMA will continue to play a role as an important stakeholder and advocate for patient safety and justice in the UK, and to punch above its weight as an innovator worldwide. We look forward to following its continuing story.