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The Harmed Patient Pathway has been designed to help healthcare providers respond compassionately to patients and families’ needs when there has been harm. It sets out the most important things that are required to support their healing journey and avoid the possibility of “second” or “compounded” harm. This document has been jointly developed by Action against Medical Accidents (AvMA) and the Harmed Patients Alliance.

This is the second main empirical paper from the NIHR (National Institute for Health and Care Research) funded Learn Together programme, led by Lauren Ramsey. In this open access paper, authors explore the historical experiences of patient safety incident investigations within the English NHS. Importantly. They also explored and contrasted the experience from the perspectives of the three key groups of people affected:  patients and families  healthcare staff involved in an incident investigation incident investigators. Key findings include: 1) Patients and families started investigation processes with cautious hope, but over time, came to realize that they lacked power, knowledge, and support to navigate the system, made clear in awaited investigation reports. 2) Fear of litigation 'baked into' organisations, not only failed to meet the needs of those affected, but also paradoxically led to some families pursuing litigation. 3) Staff also experienced exclusion, lacked support and were often left with an incomplete narrative. 4) Investigators reported investigating as a lonely, invisible and undervalued role, involving skilled “work” undertaken with limited training, resources, and infrastructure. 5) Elusive “organizational agendas” seemed to be prioritized above the needs of everyone affected by incidents.

Healthcare organisations risk harming patients and their families twofold. First, through the physical, emotional and/or financial harm caused by safety incidents themselves, and second, through the organisational response to incidents. The former is well-researched and targeted by interventions. However, the latter, termed ‘compounded harm’ is rarely acknowledged. This study aimed to explore the ways compounded harm is experienced by patients and their families as a result of organisational responses to safety incidents and propose how this may be reduced in practice. The authors identified six ways that patients and their families experienced compounded harm because of incident responses. These were feeling: (1) powerless, (2) inconsequential, (3) manipulated, (4) abandoned, (5) de-humanised and (6) disoriented. It is imperative to reduce compounded harm experienced by patients and families. The authors propose three recommendations for policy and practice: The healthcare system to recognise and address epistemic injustice and equitably support people to be equal partners throughout investigations and subsequent learning to reduce the likelihood of patients and families feeling powerless and inconsequential. Honest and transparent regulatory and organisational cultures to be fostered and enacted to reduce the likelihood of patients and families feeling manipulated The healthcare system to reorient towards providing restorative responses to harm which are human centred, relational and underpinned by dignity, safety and voluntariness to reduce the likelihood of patients and families feeling abandoned, de-humanised and disoriented.

The involvement of patients or next of kin after a serious adverse event (SAE) is evolving. Beyond providing mandatory information, there is growing recognition of the need to incorporate their interests. This Dutch qualitative study in the Journal of Patient Safety explores practical manifestations of patient and next of kin involvement and identifies significant considerations for hospitals. The findings highlight the importance of promoting meaningful involvement, recognising the significance of patient and next of kin experiences, and fostering a culture of transparency and collaboration. By examining the dynamics of involvement, this research aims to inform policy development and facilitate the implementation of patient-centred approaches to post-SAE care.

In the aftermath of adverse medical events, many patients feel abandoned by their providers and lose trust in the health care system altogether. Published in the BMJ Open Quality journal, research from the Betsy Lehman Center and co-authors at Yale University finds that enhancing patient engagement after such events has the potential to reinforce therapeutic alliances between patients and clinicians. 

There have been significant developments in patient safety over the last decade. But there is a concerning disconnect between increasing activity and progress made to embed a just and learning culture across the NHS. Recognising the challenging operational context for the NHS, this report from the Parliamentary and Health Service Ombudsman (PHSO) draws on findings from their investigations. It asks what more must be done to close the gap between ambitious patient safety objectives and the reality of frontline practice. PHSO identified 22 NHS complaint investigations closed over the past three years where they found a death was – more likely that not – avoidable. It analysed these cases for common themes and conducted in-depth interviews with the families involved. Findings PHSO found that the physical harm patients experienced was too often made worse by inadequate, defensive and insensitive responses from NHS organisations when concerns were raised. Looking at the direct causes of harm, the report identified four broad themes of clinical failings leading to avoidable death: failure to make the right diagnosis delays in providing treatment poor handovers between clinicians failure to listen to the concerns of patients or their families. The report also looked at the further harm – sometimes called compounded harm – that happens when families, who have already experienced the devastating consequences of losing a loved one, try to understand what has happened but are met with a poor response from NHS organisations. It identified several factors that contribute to compounded harm: a failure to be honest when things go wrong a lack of support to navigate systems after an incident poor-quality investigations a failure to respond to complaints in a timely and compassionate way inadequate apologies unsatisfactory learning responses. PHSO recommendations 1. Accountability for a robust and compassionate response to harm, which supports learning for systems and healing for families. The Patient Safety Incident Response Framework (PSIRF) offers a new approach to patient safety investigations. It holds great promise but needs to be accompanied by sufficient monitoring and better support for families. Recommendation 1 Integrated care boards, with oversight from NHS England, should closely monitor the impact of the PSIRF to identify any negative consequences of the new flexibility it offers, which gives Trusts more autonomy to decide when a patient safety investigation is needed. This should include paying special attention to the balance of patient safety investigations versus other learning responses in Trusts (or service areas of a Trust) where there are poor Care Quality Commission (CQC) ratings for safety and leadership, or where other national bodies have raised concerns. Recommendation 2 As part of their quality monitoring role, the PSIRF executive lead on each Board should look at any discrepancies between local and PHSO investigations, or other independent investigations, and make sure the Board discusses This should include where local investigations did not take place, or did not find that things went wrong, but PHSO or another independent oversight body later identified failings. Recommendation 3 The Department of Health and Social Care and NHS England should further scrutinise the lack of compliance with duty of candour. They should review the operation of duty of candour to assess its effectiveness and make recommendations for improvement. Recommendation 4 The Department of Health and Social Care should commit to funding further independent advocacy to support harmed patients, families and carers when they raise concerns or look for answers after an incident. 2. Evidencing that patient safety is a top Government and NHS priority NHS leaders and frontline staff need to be in no doubt of the priority placed on patient safety. But patient voice and leadership for patient safety are fractured. Political leaders have created a confusing landscape of organisations, often in knee-jerk reaction to patient safety crisis points. The Healthcare Safety Investigation Branch (HSIB), the Patient Safety Commissioner, PHSO, NHS England, NHS Resolution and at least a dozen different health and care regulators all play important roles in patient safety. But there are significant overlaps in functions, which create uncertainty about who is responsible for what. The Government must consider the case for streamlining some of these functions, for the benefit of people who use the NHS, their families and carers. This is not about reducing investment in patient safety. It is about creating a system that is coherent and easier to navigate, based on evidence and engagement with patients, families, NHS staff and leaders. Recommendation 5 The Department of Health and Social Care should commission an independent review of what an effective set of patient safety oversight bodies would look like. The review must include meaningful engagement with NHS leaders, staff, patients and families. Patient safety must be a consistent priority over the long term. It must not be subject to changes of emphasis or importance each time there is a new minister or leadership change in the NHS. Recommendation 6 The Government should seek cross-party support for commitments to embedding patient safety and the culture and leadership needed to support it as a long-term priority. It is not possible to prioritise patient safety while avoiding difficult decisions about the workforce the NHS needs. Patient safety will always be at risk in environments that are understaffed and where staff are exhausted and under unsustainable pressure. Tackling workforce shortages goes beyond political decisions about resourcing. It is about making the NHS a place where people want to work and stay because they feel valued, not just because it is a vocation. We must break down the false dichotomy between the interests of patients and staff, recognising that a system that does not treat its workforce with humanity and compassion will struggle to extend these qualities to patients and families. PHSO recognise the Government has promised to publish a new NHS workforce strategy. At the time of writing, this is expected ‘shortly’. But for this to properly address the underlying causes of NHS staffing pressures, it needs cross-party consensus. In a sector where it can take nearly two decades to train a consultant doctor, a workforce strategy will only succeed if there is support from across the political spectrum, and far beyond one parliamentary term. Recommendation 7 PHSO recommends that the Government should urgently produce its long-awaited long-term workforce strategy, with cross-party support, to increase the numbers entering and staying in the workforce across clinical and non-clinical roles. This strategy must: include independent, evidence-based and fully costed projections of future workforce requirements include detailed plans for training and recruiting new staff, retaining staff already working in the NHS and attracting those who have left to return take account of the mix of different professional skills required, rather than just total numbers in the workforce, and how existing professional skills can be deployed where they are most needed.

Despite years of calls for adoption of a Just Culture, it is evident that taking this concept from paper to practice has been slower than expected. Many have cited the subpar application of the Just Culture framework and, recently, questions have been raised regarding how the Just Culture framework is perceived by those impacted by harm, including patients, family members, and staff. Though this framework is one tool that can be used to guide inquiry after harm events, its use, independent of active efforts toward restoration of relationships with patients, families, and staff, could compromise engagement and therefore learning. A lack of focus on restoring the trust of those affected by harm in parallel with the event investigation introduces a risk of further compounding the harm for all involved. Those involved in safety work at NHS England have recognized the need to apply a systems mindset within a concerted effort toward more compassionate engagement for optimal learning and improvement. In response, they have included compassionate engagement and involvement of those affected by patient safety incidents as a foundational pillar in the NHS England Patient Safety Incident Response Framework.

The human element can give us kindness and compassion; it can also give us what we don't want— mistakes and failure. Leilani Schweitzer's son died after a series of medical mistakes. In her talk she discusses the importance and possibilities of transparency in medicine, especially after preventable errors. And how truth and compassion are essential for healing.

With the National Learning from Deaths Programme Board stalled, the bereaved families who were to be involved in its work have once again been left harmed and without any answers, write Dr Josephine Ocloo and David Smith in this HSJ article.

A video of the recent Harmed Patients Alliance webinar on restorative healing after healthcare harm.

Safety systems are socio-cultural in nature, characterised by people, their relationships to one another and to the whole. This study, publishe in the International Journal for Quality in Health Care, aimed to (i) map the social networks of New Zealand’s quality improvement and safety leaders, (ii) illuminate influential characteristics and behaviours of key network players and (iii) make recommendations regarding how networks might be optimised.

James Titcombe, Patient Safety Campaigner and co-founder of Harmed Patients Alliance, discusses the findings of the recent Bill Kirkup report 'The Life and Death of Elizabeth Dixon: A Catalyst for Change'.

Robbie Powell, 10, from Ystradgynlais, Powys, died at Swansea's Morriston Hospital, of Addison's disease in 1990. Four months earlier Addison's disease had been suspected by paediatricians at this hospital, when an ACTH test was ordered but was not carried out. Although Robbie's GPs were informed of the suspicion of Addison's disease, the need for the ACTH test and that Robbie should be immediately admitted back to hospital, if he became unwell, this crucial and lifesaving information was not communicated to Robbie's parents. At the time of Robbie's death, the Swansea Coroner refused the Powells' request for an inquest claiming that the child had died of natural causes. However, the Powells secured a 'Fiat' [Court Order] from the Attorney General in 2000 and an inquest took place in 2004, fourteen years after Robbie died. The verdict was 'natural causes contributed by neglect' confirming that an inquest should have taken place in 1990. Since Robbie's death, his father Will Powell, has mounted a long campaign to get a public inquiry into Robbie's  case. 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.

"Healthcare systems need to act in equal measures to both enable the recovery of patients and families it has harmed, and to protect future patients.... Yet providing what is set out in the Duty of Candour to harmed patients has not been framed as providing care to make sick or injured people better and/or to minimise their pain and suffering." In this blog, Jo Hughes explains why we need to reframe the Duty of Candour and explores what needs to change.

Sarah Seddon's son (Thomas) was stillborn in May 2017. The lack of candour following Thomas’ death and the conduct of the serious incident investigation impacted significantly on Sarah and her family. The local investigation was followed by a Fitness to Practise (FtP) investigation where Sarah experienced how damaging, dehumanising and traumatic FtP processes can be for patients who are required to be witnesses. Here she reflects on the impact of being a witness in a Fitness to Practise (FtP) hearing had on her.

As patients and families impacted by harm, we imagine progressive approaches in responding to patient safety incidents – focused on restoring health and repairing trust.  We can change how we respond to healthcare harm by shifting the focus away from what happened, towards who has been affected and in what way. This is your opportunity to hear about innovative approaches in Canada, New Zealand, and the United States that appreciate these human impacts.  This interactive webinar was hosted by Patients for Patient Safety Canada, the patient-led program of the Canadian Patient Safety Institute and the Canadian arm of the World Health Organization Patients for Patient Safety Global Network. View the webinar on demand and download the slides.

External Lead Advisor to WHO’s Patients for Patient Safety network, Margaret Murphy, telling the story of her son’s death and how she has used this experience to improve how healthcare organisations work with those who suffer patient harm.

This Harmed Patient Pathway was launched, and is being led, by the patient-safety charity Action against Medical Accidents (AvMA) and the Harmed Patient Alliance (HPA). Healthcare providers are used to pathways that guide them in how to care for patients with a particular diagnosis. This pathway is intended to encourage providers to recognise harmed patients as suffering a particular form of trauma for which there should be a pathway that seeks to optimise recovery. It is also intended as an obligation for providers to do what is possible to ease suffering and avoid causing further distress. The Harmed Patient Pathway is built around six key commitments based on what real harmed patients and their families explain is needed. The six commitments are: Effective and compassionate communication in line with patient/family needs and experience. Providing support and independent specialist advice to patients/families. Meaningful patient/family involvement in patient-safety investigations. Meaningfully involving patients/families in safety-improvement work. Accepting and respecting the needs of patients/families using parallel processes to achieve satisfactory answers and/or accountability that they perceive as unattainable without using those processes. Promotion of a just and restorative culture that is as attentive to the needs of harmed patients and families as it is to organisational and staff needs. AvMA and HPA are consulting on the Harmed Patient Pathway at this draft stage before they go further with developing guidance or resources. The closing date for responses to this consultation is 2 December 2024.