HelenH

Hi Susie, I'm so sorry to hear of your ghastly experience. How absolutely terrifying for you. It seems clear to me that you weren't given the information you needed to give informed consent or the options for pain relief which should have been available to you.

We've been reflecting the same as you, this does seem to be a gender issue. The recent Cumberlege report 'First Do No Harm' reflects on the patient safety issues that affected women over decades. It's not good enough.

Thanks for sharing your story; further resolve for us to continue supporting patient groups and the campaign to end such barbaric practice. 

@Stephanie O'Donohue

Great to hear about this experience. Thanks for sharing. 

Thank you so much for sharing your overall positive experience. So pleased it went well - the advice and support you received seemed spot on. I too am fascinated with seeing bits of me on screen! Fingers crossed for confirmation of a positive result.

I don’t know if you’ve heard of Care Opinion? They’re a great charity and they enable and encourage patient feedback to inform staff - to commend good practice and help identify the need for improvements in services, where needed. In case you’d like to follow up. 

thank you again. Let’s make sure everyone has your experience. Helen 

Hi @Natalie Sullivan Thanks for the question. There’s progress. Simon Stevens replied and following his announcement that outlined his 5 point action plan. NHSEI have since issued guidance to CCGs and NICE have issued their scope for guidance they’re developing. It’s progress but the clinics aren’t up and running - they’ve set a deadline of end November. These should be developed in light of the national guidelines. We’ve included all these resources on the hub (see links below). I’ve been asked to join the longcovid task force so will be able to update on the hub.

Hope that helps. Do come back with comments/questions. Helen 

National guidance for post-COVID syndrome assessment clinics (6 November 2020)

Your COVID Recovery guidance (6 November 2020)

Thanks @Emmyloow It's good to hear of your experience. We're very keen that all patients have access to advice that can help them make an informed decision. As you say, some women are fine with it and it's important that people aren't unnecessarily concerned. You make a good point about managing the risks and especially in times of covid. Thanks again

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A fascinating post, thanks @Keith Bates I’d love to find out more. Maybe we could do an interview with you and share on the hub?

Would also be interesting to connect with AI people, how these issues are considered in systematising of decision making. @Richard Jones @Clive Flashman Might you be interested too? 

Safety is always a systems issue! Need to design safety into the development  of new ways of working and be clear how to assess variance - to learn about refinement of the product/process, how to ensure effective and safe implementation and with transparent reporting and learning - if things go wrong and from good practice.

Are their patient safety design standards for software development?

Really good questions! Looking forward to sharing insights. Very excited about our collaboration @Richard Jones @Clive Flashman

I'm really keen to explore how do we know that AI is safe? And also, how AI can make us safer. We know that diagnostic errors is a huge issue and frankly not one that is getting enough attention in the patient safety community.  Too big and scary an issue?

This is a useful intro and refers to the monumentally good and scary IOM report in 2015 on Diagnostic Errors. https://psnet.ahrq.gov/primer/diagnostic-errors

Definitely something to find out what's going on in this area and what more is needed.

Brilliant to have you on board. Let's get the LinkedIn groups engaged too

Helen

Thanks @Jon Holt I was really taken by your comment 'I think the idea is that trusts do too many investigations of poor quality with a RCA conveyor belt approach and their should be fewer high quality investigations undertaken by staff with specialist skills. ' Think that resonates with @Claire Cox too. And the opportunity to use insights from near misses/patient feedback/low harm events to lead to improvement. 

Will be fascinating to hear the outcome of the pilots and how the framework can be implemented so that we maximise the value for learning and action. And of course we'd love to be able to share the (suitably anonymised) learning and action on the hub.

I've a meeting scheduled with @cheryl crocker the PS Directors for the AHSNs. I'll raise with her and feedback.

Fascinating, I had no idea. And as a Mum of two, shouldn't I have known? Is this Antenatal Perineal Massage recommended practice in the NHS?

Hi Kelly, sorry to hear that the ‘you must have been hospitalised’ restrictions are in place 

Thanks Andrea. Very helpful. 
We’ll follow up with  COVID-19 Multidisciplinary Rehabilitation Workforce

Not come across them before

@Sally A and others on longcovid support groups are highlighting that they are paying privately to access services as they are not getting referred from the NHS for the support they need. 
 

Are there others who have chosen to do this? Surely access to much needed services shouldn’t be dependent on the ability to pay for them? 

Thank you @Natalie SullivanI wonder what those existing services are? 
 

thank you @Dawn Knight Would you kindly update us if you get a response? 
 

So much for my blog, I just haven't got round to writing it. Small issue of being distracted by other issues and indeed, Covid.

My main concern is that, as I understand it, NHS organisations will assess whether there is value in undertaking an investigation for learning. If they feel that the incident has happened before, and been amply investigated, they may chose to take no action. But how do they know that there's no new learning unless the undertake an investigation? And if there was learning, then was this applied successfully - maybe not if the incident/harm was repeated?

The unintended consequence that gives me most concern is the potential impact on patients and family members. If there's harm and yet the organisational response is that no investigation is needed, how will patients and family members feel about this? Will they consider that the Trust has complied with their legal duty of candour? Will they feel that in order to get answers as to what happened and why and to get redress, they need to make a formal complaint? Will they be offered a mediation approach and if so, how will this be informed if there is no investigation? Will this frustrate families into a more litigious approach?

It will be very interesting to hear from the pilot Trusts and CCGs as to whether this has been an issue for them. And if so, what their advice would be to NHSE/I?

And have patient organisations been engaged for their views?

What do others think?

Helen

Sounds good. I know the timeframe has been put back because of the pandemic. Will be really good to get those networks established. Trust and CCGs?

And this got me wondering. Are there national or regional networks of Patient safety managers?  

Thank you @Jon Holt. Hadn’t realised they were publicly available 

Hi Mary-Jo,  a very good question and I’d very much like to know the answer! These providers are known by some informally, but I don’t think have been reported publicly. 

Maybe hub members know? @Jon Holt would be able to help on this. @Claire Cox do you know? 
 

Let’s see if we can collectively source the information to help Mary-Jo.

Thx for your comments. Increasingly others, like yourself, are calling for clinics that takes a more holistic approach regards assessment and subsequent treatment. We’ll be adding our voice to this too

Shocking. Thanks for sharing. How can that be properly informed consent? 

Thanks for your comment. That’s a really strong response from the surgeon and confirms what patients have been saying in the U.K. for years. 

@Goingviral Thank you, will do, Helen

@Goingviral And re Phase 2 of th portal, we've not heard anything. I was talking with colleagues about that yesterday. We're meeting up with Professor Trish Greenhalgh tomorrow and were going to ask whether she knows any more.

@Mark Hughes Let's include in the letter too.