richard vA

Sharing his own personal experiences of harm, Richard highlights four routes where patients and families can report patient safety incidents to ensure patients' voices can be heard and, most importantly, acted upon. Update (9 August 2023): The Learn from Patient Safety Events (LFPSE) service is a new national NHS service for the recording and analysis of patient safety events that occur in healthcare patient reporting of harm. NHS have announced a new Discovery Phase for the development of the LFPSE, which includes engaging patients. This is vital and unknown about, and needs urgent attention. I have already raised my concerns. There is more information in how to participate in the comments section below. I love and support the NHS. But when things go wrong for patients and service users, the system is often too slow to change or respond effectively. I have been through complaints, the Ombudsman and Inquest processes around the poor end of life care of my late mother. Those processes took years and were almost as stressful as those last few days of my mother’s life. I would not do it again. At the time, I reported the incident in detail to the CQC (inspectors), to the CCG (commissioners), to Healthwatch (local and national), but I noted no evidence of change. In fact, the CQC continued for years to report similar failings at the same hospital. Too many other patients and service users say the same thing. I met many of these patients/users when I was part of the user/patient led group PHSOthefacts. Then, my elderly friend and neighbour asked me to be their advocate around their wishes for end of life care and unfortunately things were not perfect at all. I was able, through connections I had made from the previous experiences I mention above, to get a meeting with senior managers involved with her care. However, sadly I do not think much came of that either. I believe others could go through the same suffering my friend experienced. There are immense pressures on the NHS. Hospitals have budgets to operate within, reputations to manage and targets to meet, as well as keeping patients and staff safe. While the system is under huge pressure, and many of the known ‘complaint’ processes are not designed to improve patient safety, the good news is there is a growing awareness of the need to listen and learn from patients and service users, drawing on the best safety science and using independent experts. Safety improvement rather than simply complaining (often seen as an administrative process) is what so many patients and families most want to see so others do not suffer the same way as their loved one. Fortunately, via a convoluted route, I did discover the Patient Safety team of NHS England who was able to take one of my concerns about care very seriously. I also learned about the development of the Healthcare Safety Investigation Branch (HSIB). So the good news is that as well as traditional routes like Complaints, the Ombudsman (PHSO) and reporting to formal bodies (perceived as inadequate by too many patients/users who have been through this process), there are four developments to note of NHS dealing with events when patients suffer harm or potential harm: 1. New guidance is being developed by NHS England to help hospitals and health services address safety concerns and involve patients in this. 2. HSIB, who carry out up to 30 independent investigations a year, is developing an exemplar model of involving the patient and family perspective in these investigations. It offers an exciting, new, more change-focused, learning-focused and system-focused way of understanding and addressing many of the harmful incidents patients' experience, aligned with service users and families who wish to embark on a journey resulting in learning. Watch this HSIB video 'Why it's important that we learn from incidents'. 3. There is increasing recognition of the role of patients in all health decision-making, which is well covered in the Patients Associations' 'Shared decision making: a reality for everyone'. In fact, I recently wrote a blog for the hub on a particular patient harm issue: 'Please don't undermine my pain relief! A call for learning and respect for patients with long tern needs', which I then shared via [email protected] and I was put in contact with a relevant Clinical Improvement Team in NHSE/I who were interested to learn more. 4. Finally, patients, service users and families can log issues on the NHS England NRLS reporting tool – although no one will get back to you personally, the information you share could be used to improve safety for future patients. However currently it is vastly under used (50 patient/family reports a year) compared to the general NHS complaints system (over 100,000 a year). In contrast, the system also logs and analyses nearly 2 million NHS staff-reported harm or potential harm incidents a year, examined by a team of NHS-employed independent patient safety experts. It may contribute to vital learning in the future and it is currently reviewed and upgraded, but to my mind the process is going too slow with regard to patient and family reporting. I think the patient, service user and family voice should be heard loud and strong. There should be a reporting option for where patients and users can go if they do not want to go through complaints, Ombudsmen, Inquest, legal or other processes (e.g. to CQC or CCG), or indeed want to do something alongside these processes and want to ensure independent health safety experts are made aware of concerning incidents. Please let me know if you are interested about developments in this latter area as there will be working groups wanting to hear the patient, service user and family experience, and I will be involved and want to ensure other harmed patient voices and their advocates are heard. The patient, service user, family and carer voice must be heard and acted on to improve patient safety at these difficult times.

This blog calls for action on the careful review of established pain medication when a patient is admitted to hospital. Richard describes the experience of two elderly patients who suffered pain due to their long term medication being stopped when they were admitted to hospital. Pain control needs must not be ignored or undermined, there needs to be carer and patient involvement and their consent, and alternative pain control must be considered. My mother, 87 years, was admitted to hospital with a suspected heart attack. At the time, she was on a strong dose of a GP-prescribed opioid (fentanyl) to manage her growing lung cancer. The Duty doctor in the hospital seemed panicked as she was so unwell and used a drug to totally reverse her morphine as they thought she had overdosed. This caused excruciating pain for most of the last 60 hours of her life. They hadn’t properly assessed the history of her prescription or asked me, her documented health advocate, about the drug or my mother’s end of life wishes. After a 2-year long traumatic journey for the family, the Inquest issued a Prevention of Future Deaths report, agreeing her prior medication should have been properly assessed. After another year and a convoluted journey through the health system, NHS England’s Patient safety team issued a National Safety Alert to all English hospitals around more careful use of pain relief reversing. Five years later, my good friend was on an unusual cocktail of GP-prescribed drugs for her very painful arthritis. She was admitted to hospital after a fall that dislocated her severely arthritic shoulder. For three days in hospital she went through different medical teams, but no one looked at her pain control needs or her unusual medication, and the only pain relief medication that had worked for her for years was removed totally from very early on in the admission. She suffered on those hard hospital beds, unable to move to a comfortable position due to her painful arthritis, lack of adequate pain control and her shoulder that remained painfully dislocated. She could not move on those beds without help. She was in agony for three days. Sadly she died of a pulmonary embolism in hospital in the midst of that traumatic experience. What both these people have in common is the neglect of their medically prescribed, carefully designed pain control to meet their unique needs, their understandable wishes and personal rights. As a result their essential pain control was totally removed while other necessary medical interventions occurred. These patient and service user’s rights were not respected. Huge suffering resulted. This I believe needs addressing and learning from. Pain control needs of patients with chronic conditions needs to be carefully assessed and addressed on all hospital admissions from the very start of admission. The current complaint and Inquest systems do not have as their agenda these types of safety learning. There are two routes whereby these incidents can be recorded, with one route that may lead to an investigation and system learning nationally. One is the NHS patient portal, which is just for reporting (no one will get back to you, but the information you share could be used to improve safety for future patients), and the other is the Healthcare Safety Investigation Branch (HSIB) who do national investigations almost always on recently occurring events. I would add there are developments in patient safety learning, including patient safety partners rolling out across some health facilities, but this is relatively early on in a national process: https://www.england.nhs.uk/patient-safety/framework-for-involving-patients-in-patient-safety/ The new NICE guidance on Shared Decision Making also adds to the pressure to learn and change from cases like this. Perhaps special guidance is needed for those admitted for emergency care with complex palliative medication needs? I hope a Body will take this up soon. The patient, service user, family and carer voice must be heard and acted on to improve patient safety at these difficult times. If you or anyone you know has had an experience like this, particularly in the last few months, do let me know by emailing me or commenting on this post below, as the routes above could lead to long lasting learning. It is sorely needed.