A patient's tales of woe

So sorry to hear.  The big question.  Who can patients and their families report these harm events to? To get independent expert patient focussed action.  No one from my experience.  There is a national consultation process needing engaging with. This must be done . Read here and please also share widely. If not now when?

See below for the information I received:

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

 "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 except 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).'

The above is NHS patient safety response to this below.  I.am very concerned that the full vital patient voice will not be heard. This is a defining moment.  

Thanks Richard, it is certainly not easy as a patient to get your voice heard, but we carry on looking to improve this through the conversations we have....

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