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A family describe the lengthy efforts they had to take to try to ensure their complaints about their loved one's end of life care would result in improvements at the hospital. Background Taking someone from hospital to die at home is a major undertaking for both the hospital and the patient’s family or caregivers. The transition inevitably disrupts a patient’s care and comfort. The disruption could no doubt be managed and accommodated if there is sufficient time. But if time is short, and particularly if problems arise, there can be chaos and confusion at a time when the dying patient and their family need a calm, orderly environment. My husband was in palliative care in hospital in early 2022 and was discharged to die at home following his wishes. From the moment the decision was made to take him home, we faced many problems. To name a few: Hospital staff had great difficulty coordinating everything required for his move home and his discharge was chaotic and delayed by more than 48 hours as a result; we experienced bullying and coercion by a nurse, who wanted us to leave when there was no hospital bed at home for my husband or confirmation one would arrive; there were errors in the supply of medication we received and its documentation (we’d received chemotherapy medication that wasn’t prescribed, but no supply of other prescribed medication, and no supply of pain relief medication in a form my husband could take as his condition had deteriorated during the delay); and there were errors in the information recorded in my husband’s discharge summary. Our complaints The chaos and confusion made my husband’s suffering worse, as well as that of his family who were traumatised by what they witnessed, and we later complained to the hospital about what we all had to endure. Much of what we had experienced could have been avoided. We were convinced that our complaints would lead to at least some improvements in the hospital’s practices and procedures. In their response, however, only in relation to one specific complaint (delay to the delivery of the hospital bed to our home) was there an explanation of the steps that the hospital would take to prevent it happening again. This meant that all the other problems we’d complained about could happen to others. Therefore, we decided to make a submission to the Parliamentary and Health Service Ombudsman (PHSO). One of the errors in my husband’s discharge summary was to his condition, which was assessed and recorded as ‘moderately frail’ (it should have been ‘terminally ill’). This information bewildered and misled us (causing some family members to delay visiting him, believing he was fitter than he was, for example) and created difficulties for the hospice nurses who came to our home to attend to him. They had prepared to assist someone ‘moderately frail’ and it took them time to adjust and get the necessary equipment and pain relief. Consequently, my husband didn’t receive intravenous morphine until one hour before he died. As a result of this and the other problems, 34 hours after arriving home my husband died having endured terrible pain and distress in chaotic and undignified conditions, which were devastating for his family to witness. The hospital had explained the cause of the error to my husband’s discharge summary: it had been auto-populated from his admission data. Severity of Injustice This was duly confirmed as a failing by the PHSO investigation and classified as level 1 in the PHSO’s ‘Severity of Injustice’ scale.[1] This classification surprised us, because level 1 is assigned to failings considered to cause "annoyance, frustration, worry or inconvenience, typically arising from a single (one-off) incidence of maladministration or service failure".[2] A failing due to auto-population of data is a systemic failing, designed to recur, not intended to be a one-off event. We were even more surprised and disappointed to learn that when failings are classified as level 1 or level 2 in the PHSO’s six-level ‘Severity of Injustice’ scale, no further action is taken. When we first complained to the hospital we were encouraged by the information on its website, which expressed a desire to learn from mistakes and improve how they do things in the future. When we made our submission to the PHSO, we were convinced by the information on their website that our efforts would lead to improvements. The objective of improvement to services is repeated in several places. For example: "If we decide that the organization got things wrong..., we can recommend what it should do about this. We can ask an organization to improve its services to avoid the same things happening again."[3] The PHSO carried out two investigations into our complaints. The report on the first contained so many errors, misunderstandings and omissions that our caseworker abandoned it and opened a new case. The two investigations, from our first submission to the last communication, took 16 months. Towards the end of those 16 months, we saw that when a failing is identified, complainants are directed to the ‘Severity of Injustice,’ which focuses not on service improvement but on financial remedy. Failings assigned to level 1 and 2 require no further action. For failings assigned to levels 3–6, financial remedy is considered appropriate. But regardless of level, there are no references to improvement or recommendations, nor does the PHSO appear to publish a comparable document describing the kind of recommendations that might be considered appropriate in relation to failings. What happens to the objective of improvement? It is extraordinary to us that the PHSO can identify a failing in a hospital’s practices (and a systemic one too, as in our case) but make no recommendation for the hospital to address it. Unaddressed, such failings can happen again. They may also be complained about and investigated again. What’s the point of a process with such an outcome? Financial compensation is an important consideration, but what happens to the objective of improvement? In the course of our PHSO investigations, it fell by the wayside. Without improvement to all levels of failings, our NHS will surely be peppered with examples of substandard practices. Patients will continue to suffer avoidable harm. Public money will be wasted on investigations into other patients’ complaints about the same failing. The thorough review and reform of PHSO procedures called for over a year ago[4] is long overdue to address this bizarre, frustrating and wasteful situation. We call on hospitals, as well, to review their response to patients’ complaints. If the hospital had responded to our complaint more constructively in 2022, there would have been no need for two PHSO investigations which lasted 16 months and used resources that might have been better deployed elsewhere, and which served only to exacerbate and prolong his family’s trauma. References Parliamentary and Health Service Ombudsman. Our guidance on financial remedy. https://www.ombudsman.org.uk/sites/default/files/Our-guidance-on-financial-remedy-1.pdf, accessed May 30 2024. Parliamentary and Health Service Ombudsman. Our guidance on financial remedy, p.5. https://www.ombudsman.org.uk/sites/default/files/Our-guidance-on-financial-remedy-1.pdf, accessed May 30 2024. Parliamentary and Health Service Ombudsman. What we can and can’t help with. https://www.ombudsman.org.uk/making-complaint/what-we-can-and-cant-help, accessed May 30 2024. MPs lament NHS and government complaints body’s “lack of ambition” to return to pre-pandemic service delivery levels. https://committees.parliament.uk/work/6930/parliamentary-and-health-service-ombudsman-scrutiny-202122/news/194562/mps-lament-nhs-and-government-complaints-bodys-lack-of-ambition-to-return-to-prepandemic-service-delivery-levels/, accessed May 30 2024.