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


    richard vA

    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.

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    Watch for update.  Further delays in any improvement at all so continuing failure to allow patients families and public to properly record harm events . Dangerous health care where and when it occurs allowed to continue 

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    Little Optimism.  When I see the lack of harmed patient voices at the new Patient Safety Commissioners advisory body I wonder how and why the voice of patients,  without any other interest apart from harm prevention and learning , are still kept away from the centre. What do governing bodies fear and are trying to hide, deny,  cover up, under play? Very worrying,  annoying,  heart breaking, infuriating... legitimate feelings at this time. 

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    Something is happening but it is under radar of too many patients.  Where do patient report harm events.  No where...still...yet. how can they?

    I have been made aware of a consultation happening as part of a Discovery Phase for the development of The Learn from Patient Safety Events (LFPSE) service. See below for the information I received:

    Consultation by NHS England. "Discovery Phase is taking place over around 8 weeks, with the involvement of a Patient Safety Partner recruited through our internal processes.

    I’ve included an excerpt from the Task Profile we used for recruitment below, which explains more about the phase and its aims.

    1.          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. This utilises new digital technologies to support learning from what does and does not go well, by replacing the National Reporting and Learning System with a new safety learning system. The service introduces a range of innovations to support the NHS to improve learning from the over 2.5 million patient safety events recorded each year, to help make care safer (see ‘How LFPSE will improve patient safety learning’). View this short animation: Introducing the Learn from Patient Safety Events service - YouTube.

    2.         Patients Safety Partner involvement is important for understanding how best to ensure patients, carers and families can contribute to national patient safety learning and improvement. The LFPSE project team are undertaking a Discovery Phase to understand how Patients and Families can best share their safety experiences within the NHS to help support national learning and improvement. A ‘discovery phase’ is a process that helps to “define the problem” and decide what (if any) work then needs to take place (e.g. designing and building software/applications).

    3.         The work will involve identifying target audiences (who else do we need to involve in the research?), what needs they are trying to meet (their aims after experiencing a patient safety event), what existing feedback channels or processes there are in place (where do people already go when wanting to share such information and experiences?), and any concerns/issues with current options (what stops people sharing their experiences? What makes it difficult to do? What gets in the way of this being used for learning?). At the end of the discovery phase, we will produce a report that summarises our findings, and makes recommendations for what should happen next. “

    We are recruiting patients and families via a number of channels – some directly, like yourself, where they have expressed an interest previously, and some via NHS England’s engagement teams, as well as via CQC. We have reached out to a number of advocacy groups (AvMA, Patients Association, Harmed Patients Alliance, and Care Opinion) to try to get a wide range of views represented, both of patients with experience of harm, and those without. This is important to ensure we design a user-friendly service for “novice” patients, as well as those who understand the landscape of patient safety better.


    The questions asked will cover things like whether the individual has any personal/family experience of harm; if not, do they know what a patient safety incident is, how they would describe the concept in their own words, where they would go if they had an experience that might involve a patient safety issue, what they would want out of that process, etc.

    The intention is very much to get a sense of the current state of play, level of knowledge and awareness of issues, terminology, and options open to patients, and to then use that to explore what kind of service will work best to ensure we can gather the learning from patients for use at a national level, whilst also giving patients what they need in terms of feedback/closure etc (which will likely need to happen at the provider level, rather than nationally).'

    to ask to be involved contact lucie.mussett@nhs.net  or natasha.hughes@nhs.net

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    No one currently investigates patient reports of harm from the patient perspective,  with a patient eye view & patient interests at heart.  They would require  both TRUE INDEPENDENCE ( of the reputation protecting NHS Trust involved and also be a fearless challenger, if needed  of the existing NHS  system and clinical base)  AND TRUE WIDE RANGING EXPERTISE  ( clinical,  human factors, safety & patient need focus), all woth with PATIENT OVERSIGHT  ( empowered. Informed. Suitably Rewarded. Co produced in a nutshell). Who can do that? Who will dare do that.  It is needed,  urgently . Will NHSE patient Safety dare? If you have thoughts: share here. Contact NHS staff above

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    I asked at my one hour session that harmed patient experts by experience are involved  in drafting of this key report. Nothing about us without us. I am still seeking assurance 

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    Update. Blog here .my meta concern is in the comments section. Patient reported harm needs Patient Involvement at all levels in the process,  empowered.  I do not see that. 

     

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    Patient exclusion at a fundamental level from NHS  is a growing concern, even from exemplar services with models with much Patient rhetoric but no evidence 

     

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