How can patients' voices be heard and acted upon when they attempt to report incidents of harm?

Summary

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.

Content

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 ENGLAND.shareddecisionmaking@nhs.net 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.

About the Author

Richard von Abendorff, son and friend of the patients in this blog. Patient safety campaigner, a member of the Advisory Panel and Citizens Partnership of the Healthcare Safety Investigation Branch and previously a Patient Public Voice for NHS England Patient Safety Team.

I write this all in a personal capacity as part of an ongoing campaign to get learning and patient/users voices heard and acted upon. They must be central to these processes as Berwick argued some years ago now.