This Harmed Patient Pathway is a collaboration between people with a wealth of experience of the impact on ​patients caused by an avoidable medical accident. The project was launched, and is being led, by the patient-safety ​charity Action against Medical Accidents (AvMA) and the Harmed Patient Alliance (HPA). The core group that ​developed the draft pathway includes colleagues from the Maternity and Newborn Safety Investigations ​programme and the charity, Making Families Count. And, at various points, there has been input from patient-safety ​specialists at NHS trusts who kindly offered views and suggestions.

When things go wrong in healthcare, there is, rightly, focus on learning and change to protect future patients, not ​least through the development of NHS England’s Patient Safety Incident Response Framework (PSIRF). However, if ​there is not equal focus on how to mitigate the impact on the harmed patient and their family and a genuine striving ​for just relations with them in the aftermath, then they will almost certainly experience compounded harm and ​healing will be compromised. Breakdowns in relations, poor communication and deepened mistrust between the ​patient and healthcare professionals causes additional suffering for everyone affected.

While in recent years there has been a positive focus and investment on quantifying and reducing other types of ​avoidable healthcare harm, nowhere near enough energy, focus and investment has been put into developing ​systems and processes to meet the needs of harmed patients and families to spare them further avoidable distress. ​This pathway complements the progress that has been made with the compassionate engagement elements of ​PSIRF while also addressing experiences outside the safety-investigation process so that all the currently known ​sources of compounded harm from the actions of NHS trusts and staff can be addressed.

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.

We have a wealth of patient evidence that demonstrates that compounded harm could be eliminated – or at least ​minimised – if the commitments in this pathway towards harmed-patient wellbeing are sincerely adopted.

Suboptimal healing and recovery and/or avoidable compounded harm have become an almost inevitable ​consequence of the way the current system operates. Harmed patients and families routinely do not have their ​needs understood and met when truthful answers and explanations emerge only after prolonged adversarial ​processes involving constantly reliving what happened. The landscape to be navigated is complex and can be ​experienced as cold, defensive, neglectful, legalistic and isolating rather than caring, attentive, supportive and ​healing.

The adversarialism we describe above takes its toll on staff, who we recognise are already under ​immense pressure due to the well-documented wider strains on the NHS. Staff who feel genuinely ​supported to act according to the commitments in this pathway will be better able to communicate ​compassionately and openly with harmed people, which should relieve some unnecessary stress ​for them.

This pathway is not a tick list that healthcare providers without a deliberately restorative and just ethos can be seen ​to have adequately adopted. The pathway is a series of commitments for trusts to take seriously, and one measure ​of success will be real harmed-patient testimony. We believe that this work requires firm commitment and ​engagement for it to be truly effective at minimising avoidable distress for harmed patients/families. Any initiative ​that is designed to bring positive change will require effort to implement; that effort will pay dividends for patients ​and staff.

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.
  

In developing this draft, we have given considerable thought to aligning the work with the principles of restorative ​practice, i.e., to the mindset and behaviours required to support just and trusting relationships, resolve conflicts and ​repair harm. We also promote the exploration of the use of restorative principles and practices in any alternative ​dispute-resolution process to try to achieve a non-adversarial, safe and dignifying experience for all affected ​thereby avoiding the compounded harm and significant financial costs associated with traditional legal processes.

This pathway is intended to achieve better health and wellbeing ​outcomes for harmed patients and families, which is its number ​one aim. Properly and sincerely adopted, we believe the ​commitments will also result in better experiences for staff ​involved in incidents and will have a positive impact on reducing ​complaints and litigation.

Given the considerable local autonomy with which the NHS operates, it would not, in our view, be appropriate for ​us to prescribe how to embed these commitments; we recognise that what might work in one place may not in ​another. However, we believe, two key elements are leadership support and buy-in, and a recognition that it will ​require effort and transparency to work through the six commitments and honestly self-assess how near or far you ​are from achieving each of the 34 underlying essential elements.

We have decided to consult on the Harmed Patient Pathway at this draft stage before we go further with ​developing guidance or resources. A more detailed how-to guide is in development, which we will consult on in ​due course to get feedback on what stakeholders feel would be most useful to support the embedding of the ​pathway in healthcare settings.

The people and organisations behind developing this guidance have many years’ experience working with patients ​who have been avoidably harmed because of a medical incident and some have lived their own experience. Each ​harmful incident is unique. If healthcare providers focus on genuinely honouring the commitments in this pathway, ​then a context-specific, human-centred route to healing and learning can be achieved despite this uniqueness. If ​this is the case, then much of the compounded harm that results from ‘process over people’ could be eliminated ​once and for all. We hope you agree and will make the commitments necessary for your organisation.

Early work on this pathway was referenced in the compassionate engagement guidance issued by NHS England in ​support of the development of the Patient Safety Incident Response Framework (PSIRF). Adopting the pathway is a ​necessary accompaniment to the PSIRF to ensure both healing and learning are optimised after harm. As ​importantly, outside of England, elsewhere in the UK, where there are other patient-safety incident protocols, we ​believe that this pathway can be applied as it is not limited to a PSIRF-only environment.

Set out below are the six key commitments and a number of questions. Please note that in the questions we use ​the term ‘those affected’ to mean harmed patients and any family member or friend/helper who lends them support ​in anything other than a professional capacity.

The purpose of the questions is to help us refine the commitments and any associated guidance that we may ​develop. Regarding the answers to question 17, we are keen to understand what barriers you may face. The ​answers will shape both the future development of the pathway and our campaigning work and other priorities as ​we will want to overcome obstacles especially those relating to resource prioritisation.

The closing date for responses is 2 December 2024. If you would like to discuss further involvement in this work ​with us, please e-mail us at hpp@avma.org.uk.