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In the two weeks before his death Robbie was seen seven times by five different GPs. The child was seen by three different GPs four times in the last three days when he was so weak and dehydrated he was bedbound and unable to stand unassisted. Only one GP read the medical records, six days before death, and was aware of the suspicion of Addison's disease, the need for the ACTH test and the instruction to immediately admit the child back to hospital if he became unwell. The GP informed the Powells that he would refer Robbie back to hospital immediately that day but did not inform them that Addison's disease had been suspected. The referral letter was not typed until after Robbie had already died and was backdated to the day following the consultation. In a statement after Robbie's death this GP stated: "An Addisonian crisis is precipitated by an intercurrent illness and the stress it induces." Dyfed-Powys Police investigated Robbie's death between 1994 and 1996 but asserted, supported by the Crown prosecution Service in Wales, that there was no evidence of crimes committed by the GPs who, incidentally, were retained by this police force as police surgeons. Following a complaint by Will Powell (Robbie's father) in 1998 against the Deputy Chief Constable of Dyfed-Powys Police, regarding the inadequacies of the criminal investigation, a second criminal investigation was agreed, which commenced in January 1999. As with the first criminal investigation, there was a gross failure to adequately investigate the criminality of the doctors. This resulted in Will Powell making a formal complaint against the Chief Constable of Dyfed-Powys Police in late 1999. This complaint against the Chief Constable resulted in Dyfed-Powys Police appointing an outside police force to review Robbie's case in 2000. Detective Chief Inspector Robert Poole [DCI Poole] from West Midlands Police was appointed. DCI Poole’s investigation report, entitled 'Operation Radiance', which was based on the documents provided to Dyfed Powys Police in March 1994, by Will Powell and his solicitor, was submitted to CPS York in March 2002. This report put forward 35 suggested criminal charges against five GPs and their medical secretary. The listed charges were: gross negligence manslaughter forgery attempting to pervert the course of justice conspiracy to pervert the course of justice. DCI Poole's investigation also resulted in a disciplinary inquiry by Avon & Somerset Constabulary into Will Powell's allegations of misconduct against Dyfed-Powys Police officers with regards to their two inept criminal investigations between 1994 and 2000. Dyfed-Powys Police was found to have been 'institutionally incompetent' but no police officer was made accountable. In April 2003, Will Powell met representatives from the CPS in London, who accepted there was sufficient evidence to prosecute two GPs and their secretary for forgery and perverting the course of justice. However, they would not prosecuted because of (1) the passage of time, which was caused by a decade of cover ups between 1990 and the appointment of DCI Poole in 2000, (2) Dyfed Powys Police had provided the GPs with a letter of immunity, and (3) the available evidence had been initially overlooked by the police and the CPS, between 1994 and 2000, for a variety of reasons. Following a 2013 adjournment debate, in the House of Commons, the Director of Public Prosecutions subsequently agreed, in October 2014, that there would be an independent review of the decisions made by Crown Prosecution Service, in 2003, not to prosecute, when there was sufficient evidence to do so. The reviewing Queen's Counsels have been provided with a report, written by myself ( a healthcare IT professional, former head of IT in an NHS trust and clinician) on major anomalies in Robbie's Morriston Hospital computerised records, which were erased during the first criminal investigation between 1994 and 1996. The review has not been concluded six years on. The letter below (and also attached) from the English and Welsh Ombudsman was sent on 10 November 2020 sets out the case for a Public Inquiry.

Elizabeth Dixon was a child with special health needs. She had been born prematurely at Frimley Park Hospital on 14 December 2000. Following treatment and care at Great Ormond Street Hospital and a children’s hospice she was nursed at home under a care package. As a result of a failure to clear a tracheostomy tube she asphyxiated and was pronounced dead at Frimley Park hospital on 4 December 2001. The investigation chaired by Dr Bill Kirkup looked at the events surrounding the care of Elizabeth and makes a series of recommendations in respect of the failures in the care she received from the NHS. Recommendations Hypertension (high blood pressure) in infants is a problem that is under-recognised and inconsistently managed, leading to significant complications. Its profile should be raised with clinicians; there should be a single standard set of charts showing the acceptable range at different ages and gestations; and a single protocol to reduce blood pressure safely. Blood pressure should be incorporated into a single early warning score to alert clinicians to deterioration in children in hospital. Community care for patients with complex conditions or conditions requiring complex care must be properly planned, taking into account and specifying safety, effectiveness and patient experience. The presence of mental or physical disability must not be used to justify or excuse different standards of care. Commissioning of NHS services from private providers should not take for granted the existence of the same systems of clinical governance as are mandated for NHS providers. These must be specified explicitly. Communication between clinicians, particularly when care is handed over from one team or unit to another, must be clear, include all relevant facts and use unambiguous terms. Terms such as palliative care and terminal care may be misleading and should be avoided or clarified. Training in clinical error, reactions to error and responding with honesty, investigation and learning should become part of the core curriculum for clinicians. Although it is true that curricula are already crowded with essential technical and scientific knowledge, it cannot be the case that no room can be found for training in the third leading cause of death in western health systems. Clinical error, openly disclosed, investigated and learned from, must not be subject to blame. Conversely, there should be zero tolerance of cover up, deception and fabrication in any health care setting, not least in the aftermath of error. There should be a clear mechanism to hold individuals to account for giving false information or concealing information relating to public services, and for failing to assist investigations. The Public Authority (Accountability) Bill drawn up in the aftermath of the Hillsborough Independent Panel and Inquests sets out a commendable framework to put this in legislation. It should be re-examined. The existing haphazard system of generating clinical expert witnesses is not fit for purpose. It should be reviewed, taking onto account the clear need for transparent, formalised systems and clinical governance. Professional regulatory and criminal justice systems should contain an inbuilt ‘stop’ mechanism to be activated when an investigation reveals evidence of systematic or organisational failures and which will trigger an appropriate investigation into those wider systemic failures. Scrutiny of deaths should be robust enough to pick up instances of untoward death being passed off as expected. Despite changes to systems for child and adult deaths, concern remains that without independent review such cases may continue to occur. The introduction of medical examiners should be reviewed with a view to making them properly independent. Local health service complaints systems are currently subject to change as part of wider reform of public sector complaints. Implementation of a better system of responding to complaints must be done in such a way as to ensure the integration of complaints into NHS clinical governance as a valuable source of information on safety, effectiveness and patient experience. The approaches available to patients and families who have not been treated with openness and transparency are multiple and complex, and it is easy to embark inadvertently on a path that is ill-suited to deliver the answers that are being sought. There should be clear signposting to help families and the many organisations concerned. Ministerial Statement Anne and Graeme Dixon reaction to Dr Bill Kirkup’s report Patient Safety Learning's statement on the Dixon Inquiry report

Mersey Care outlines the work they are doing to embrace a just and learning culture, centred on the desire to create an environment where staff feel supported and empowered to learn when things do not go as expected, rather than feeling blamed. You can watch a short film about the issues they want to address and see how they've created a practical tool to aid some of the most delicate staffing conversations. They've also developed free online training aimed at HR staff but accessible to all from their web page.

I believe all clinicians should read this latest report. There is so much to be learned and so many changes in clinical practice that can be made right away. Since 2018, I have been teaching using Oliver's tragic story to promote reflection on best practice in prescribing and in implementing the Mental Capacity Act. I could write a lot here; however, I believe this is a report all clinicians, and especially all prescribers, need to read in full. A summary of how I see this (or indeed how any individual sees it) it will not be adequate.

When considering the persistence of unsafe care, a recurring theme that emerges is a failure to involve patients in their own care. Patient safety concerns raised by patients and family members are too often not acted on and, when harm occurs, they are often left out of the investigation process. As set out in Patient Safety Learning’s A Blueprint for Action, we share the view that patient engagement is key to improving patient safety, with this forming one of our six foundations of safer care.[1] The NHS Patient Safety Strategy identifies the involvement of patients in patient safety “throughout the whole system” as a key part of achieving its future patient safety vision.[2] The strategy includes plans to create a patient safety partners framework; earlier this year, the NHS published a consultation on its draft Framework for involving patients in patient safety.[3] In this blog, we will provide a summary of our feedback to the consultation. You can find our full submission at the end of this blog. Involving patients in their own safety The NHS Framework is divided into two parts, the first of which sets out the broad approach that should be taken to involving patients in their own healthcare and safety. We particularly welcome its emphasis on: encouraging patients to ask questions; if problems occur, the importance of providing information and help to maintain patients’ safety; the role of patient incident reports and complaints as a source of learning. In our response, we fed back with our thoughts on improvements in two specific areas - complaints and patient safety incident reporting. Complaints We share the view set out in the Framework that patient complaints should be viewed as “a valuable resource for monitoring and improving patient safety”.[3] We believe it’s important the Framework is joined up with the ongoing work of the Parliamentary and Health Service Ombudsman (PHSO), who have recently completed a consultation on a new Complaints Standard Framework for the NHS.[4] We believe that this presents an opportunity to embed patient safety into these processes and we responded to the PHSO consultation highlighting this. Patient safety incident reporting The Framework highlights the importance of patients reporting patient safety incidents, noting that the future introduction of a new Patient Safety Incident Management System will create “new tools to more easily participate in the recording of patient safety incidents and to support national learning”.[3] We believe more needs to be to be done to address the cultural barriers that deter patients from reporting concerns. Patients, carers and families need to feel assured that their stories and testimonies are welcome. Alongside this, it is crucial that, when concerns are reported, they are used to inform the assessment of risk and patient safety. As noted in the Cumberlege Review, not only are incidents not being reported but the existing systems “cannot be relied upon to identify promptly significant adverse outcomes arising from a medication or device because it lacks the means to do so”.[5] Patient Safety Partners The second part of the Framework is concerned with the newly proposed role of Patient Safety Partners (PSPs) in NHS organisations. PSPs would formally participate in safety and quality committees, patient safety improvement projects and investigation oversight groups. In our consultation response, we highlighted several areas where we feel these proposals require strengthening if they are to be successful. Training and guidance for staff The Framework rightly acknowledges the importance of having appropriate training and guidance for staff to help support the new PSP roles, pointing towards the new National patient safety syllabus as a key source. We have concerns that the National patient safety syllabus, in its current form, does not have a strong enough focus on patient involvement to provide this support. We highlighted the need for a greater emphasis on the skills and knowledge required to understand why and how patients can be actively involved in patient safety in our response to the consultation on the draft syllabus earlier this year.[6] We believe the syllabus could be significantly strengthened by drawing on further research and resources available in this area, such as the World Health Organization (WHO) Patient Safety Curriculum Guide.[7] Support and peer networks for PSPs We believe there needs to be more clarity about the induction and training that would be made available to PSPs. We also make the case that PSPs need access to networks with their peers PSPs in other organisations, enabling them to share good practice for safety improvement and receive support from others. We believe that it would be beneficial to create these networks alongside the new PSP roles. We suggest it would be helpful to draw on experiences of other programmes involving patients in patient safety, such as the WHO Patients for Patient Safety programme in the UK and the Canadian Patients for Patient Safety programme.[8] [9] Patient Safety Specialists The Framework makes brief reference to the relationship between future PSPs and the newly proposed Patient Safety Specialists, which all trusts and CCGs have been asked to put in place by the end of November.[10] We believe that if Patient Safety Specialists are to work effectively in organisations then these roles will need to be filled by leaders with expertise in patient engagement. Responding to a consultation earlier this year, we commented that those filling these roles will need strong skills and experience.[11] We also believe the Framework should place a great emphasis on the role of Patient Safety Specialists in supporting the work of PSPs. Co-production In our feedback, we also argue that there should be a strong emphasis on co-production with PSPs and more broadly throughout this Framework. ‘Co-production’ is an activity, an approach and an ethos which involves members of staff, patients and the public working together, sharing power and responsibility across the entirety of a project.[12] In our view, projects and patient safety programmes should always be co-produced with patients where possible. What needs to be included in the Framework As well as commenting on the specific proposals of the Framework, we identified two additional areas which we believe should be added to it: 1. Measuring and monitoring performance Patient Safety Learning believes that, to make improvements in the involvement of patients in patient safety, we need to be able to clearly measure and monitor our progress. Publicly reporting on changes and improvements made through patient involvement and patient safety allows for sharing examples of good practice. It would also mitigate against concerns that the role of PSP could become tokenistic in some organisations, resulting in little real impact. 2. Restorative Justice Many national healthcare systems and organisations are actively listening to, and engaging with, patients for learning through restorative justice. Restorative justice in healthcare allows patients to be heard, listened to, and respected. By patients, clinicians, healthcare leaders and policy makers engaging with one another on patient safety, it can help to establish trust with the patient. This can also provide the impetus for learning and action to be taken to prevent future harm. We commend the approach adopted by New Zealand’s Ministry of Health in how it responded to harm from surgical mesh and the impact this has had on improvements in patient safety.[13] Closer to home, there are some beacons of good practice within the NHS, such as the Mersey Care NHS Foundation Trust.[14] We believe that the NHS should do more to share and promote a just and learning culture, asking organisations to develop and publish goals on their progress. Only one piece of the puzzle We welcome and recognise the positive steps being set out in the Framework to improve patient involvement in patient safety within the NHS. Our comments and suggestions for improvement are mainly centred around the need to ensure other key pieces are in place. Significant change is still needed. The Framework focuses on increasing patient involvement in governance and decision-making. This wider need for change in how we engage patients in patient safety is outlined in the recently published WHO Global Patient Safety Action Plan 2021-2030.[15] It promotes a range of actions for governments and healthcare organisations to help engage patients and their families in patient safety; we would expect to see this reflected in the work of NHS England and NHS Improvement. Strengthened as we suggest, we believe that the Framework could make a big difference to improving patient involvement with patient safety. References Patient Safety Learning. The Patient-Safe Future: A Blueprint for Action, 2019. NHS England and NHS Improvement. The NHS Patient Safety Strategy: Safer culture, safe systems, safer patients, July 2019. NHS England and NHS Improvement. Framework for involving patients in patient safety, 10 March 2020. PHSO. Making Complaints Count: Supporting complaints handling in the NHS and UK Government Departments, July 2020. The Independent Medicines and Medical Devices Safety Review. First Do No Harm, 8 July 2020. Patient Safety Learning. Patient Safety Learning’s response to the National patient safety syllabus 1.0, 28 February 2020. World Health Organization. Patient Safety Curriculum Guide, 2011. Action Against Medical Accidents. Patients for Patient Safety, Last Accessed 15 October 2020. Canadian Patient Safety Institute, Patients for Patient Safety Canada, Last Accessed 16 October 2020. NHS England and NHS Improvement. Patient Safety Specialists, Last Accessed 15 October 2020. Patient Safety Learning. Response to the Patient Safety Specialists consultation, 12 March 2020. Dr Erin Walker, What should co-production look like?, 1 April 2019; National Institute for Health Research, Guidance on co-producing a research project, March 2018. Jo Wailling, Chris Marshall & Jill Wilkinson. Hearing and responding to the stories of survivors of surgical mesh: Ngā kōrero a ngā mōrehu – he urupare (A report for the Ministry of Health). Wellington: The Diana Unwin Chair in Restorative Justice, Victoria University of Wellington, 2019. Mersey Care NHS Foundation Trust. Just and Learning Culture – What it Means for Mersey Care, Last Accessed 16 October 2020. World Health Organization. Global Patient Safety Action Plan 2021-2030: Towards Zero Patient Harm in Health Care, 28 August 2020.