HelenH

Thank you @Suze for sharing your experiences. My family have similar experiences with ADHD medication, it’s so frustrating and debilitating. And clearly a risk to you too, without your medication. 

Hi @mo_hafeez Thank you  for sharing your information. It sounds that the supply challenges are long standaing, not just in relation to more recent concerns. Would you be able to share more information, either attributly or anoynmously? If so, a collegue of mine would be happy to contact you and help write up your experience in more detail for publication on the hub. It would be very helpful to share the personal impact of these challenges, it sounds very hard for you and your family.

Best wishes and thanks again

Helen

@Stephanie O'Donohue

Care Opinion are great, and it’s information that’s in the public domain so most Trusts do respond. Worth it if you feel it’s right for you. 

Someone close to me is prescribed ADHD medication. They were given a repeat prescription but told by the pharmacist that it wasn’t available in the dose prescribed. The patient and the pharmacy rang round other pharmacies to be told that this wasn't an isolated incident, none available. There was a slightly lower dose available but no pharmacy would dispense without a new prescription. The GP wouldn’t prescribe without going back to the Consultant who originally diagnosed ADHD and made the first prescription. Then a run around trying to get a prescription that managed to match the dose available; the later changing daily as the demand was so great that the drug flew off the shelves as if it was a prize Christmas present that all kids wanted. Farcical and hugely stressful. The outcome was the patient went without ANY medication for over a month. Now resolved but really worrying. No long term effect but it was having a negative impact on mood, motivation, employment etc. And the worry that will this happen again. 
 

Is anyone reporting this and if so where? Don’t think MHRA’s Yellow Card scheme would pick this up nor the NHS patient safety incident reporting system. So it’s a big unknown the impact on patient wellbeing and patient safety? 

Thanks @Sue Barker You may also be intersted in the recent blog on a PSP workshop in Kingston.

Are you a member of the PSP network? Next meeting 5th Sept. If you're not yet a member, let me know and I'll send you an invite helen@patientsafetylearning.org

Hello everyone. A colleague from the Patient Safety Management Network has asked whether there is an organisational PSP Policy that could be shared. If you have one that we could add to the hub, we'd be very grateful.

Thanks, Helen

It’s a fantastic opportunity for transformational change. Go PSPs! 

A rich conversation already 🙂

I'm definitely in agreement with 'form following function' - and there's been a bit of that as an issue with PS Partners. I've heard of some experiences that are essentially 'well, now we've got them, what do we do with them?' That's not great! There is deeinitely an apetite from many to really be challenged and engage differently with patients. To have the impact, these voices need to heard at senior levels. So I agree, informing operational delivery but with a strong stratgegic impact.

Thanks Mark. A good question, and presumably this is line management reporting (‘who’s your boss’) as well as any reporting of insights and feedback from PSP. Which may be the same, or maybe different? 
Helen  

Hi @Gethin and @Callum Brown

A few collegues are actively discussing creating a PS Ed & Training network. There seems to be a lot of interest in this, focusing particularily on PSIRF but more broadly too.

Would that be something you'd like to engage with? Copying to @Claire Cox @Chris Elston @Elizabeth Akers

Helen

Thanks @NickyG that’s great to hear. Thanks for sharing and it gives hope that this can be delivered safely 

Heartily endorse the great people at CAPH, terrific campaigners and providing compassionate support to so many sufferers 

Hi @poolsadie

sadly you’re absolutely right. This doesn’t seem restricted to the UK by any means. What a gruesome experience you had, yourself and also the poor woman before you. Thanks for sharing and being part of the awareness raising and campaigning. Women must have information to make informed consent and access to pain relief. 
Helen

Hi @Exonian Thank you for sharing a gruesome and shocking experience.
 

A really chilling indictment:

‘I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.’

Hi @Carrie So sorry to hear of your experience. Absolutely; the patient safety impact casts a long shadow, much greater harm that the awful pain experienced. 

Hi @Exonian Thank you for sharing a gruesome and shocking experience.
 

A really chilling indictment:

‘I will never, ever consent to any medical or surgical procedure again without doing extensive research, because HCPs cannot be trusted to tell the truth or act in the patient’s best interests, which is an extremely sad indictment.’

Hi @Exonian That sounds ghastly, so sorry to hear. And being a nurse, you’ll be even more aghast at how awful it is that women’s pain is ignored or minimised. Something that many women are understandably shocked about. If there was something that you’d want to share your reflections as a patient and a professional, we’d welcome that on the hub. Thank you again, sharing your insights, Helen 

Sorry Tricia to hear of your experience and the pain. It's definitely too often the case that women are not given information in advance on the levels of pain likely or the pain relief available; and it's their right to chose. Without this, we consider its not informed consent.

@Katharine Tylko and colleagues at CAPH are more up on the reseach that me but it's clear that much more research is needed to better understand the risk factors for women. It does seem that not having a vaginal birth may be a contributory factor. 

Thank you for sharing your experience. We refer to these testimonies in our camapiagning and awareness raising so they do make a difference. Helen

Hello @Beckyish and very sorry to hear of your experience. It’s ghastly and all the more shocking for you not being given sufficient information to make an informed decision to consent to treatment, something that is your legal right. I shudder at your testimony ‘The pain was unbearable … a struggled to cope, the surgeon had to stop to ask me to try and relax to allow him to continue.’ Sounds absolutely barbaric.

Thank you for sharing your insights. We are collating these experiences to press ahead the need for reform, see our call for action blog, details below. It also links to the CAPH, a campaign and support group who you may wish to get in touch with, lovely women and we support them as much as we can. 
 

Thank you again for sharing 

https://www.pslhub.org/learn/patient-safety-in-health-and-care/womens-health/hysteroscopy-6-calls-for-action-to-prevent-avoidable-harm-r8848/

The blog I referred to is here  https://www.pslhub.org/learn/patient-safety-in-health-and-care/womens-health/hysteroscopy-6-calls-for-action-to-prevent-avoidable-harm-r8848/

Thanks @Eliza for sharing your distressing and painful experience. We’ve just published an updated blog about why change is urgently needed and hope the continued reporting of personal experiences with the policy influencing will drive the improvements needed. 

Horrendous experience, so awful for you. And awful that others are likely to be suffering without the change in attitude and approach that are needed. 

1 hour ago, Rainyflower said:

I just wanted to also reply so others didn’t feel so much anxiety after reading some of these. I took 4 Motrin 2 hours prior to my hysterectomy and had local anesthesia only and the pain was pretty much the same as a routine Pap smear. I also have a retroverted uterus so there was a lot of moving around of the camera. But the process only took my doctor about 2 minutes total so it’s definitely nothing to get too worked up over with anxiousness prior.

Relieved to hear you had a positive experience. Services clearly can provided that are pain free and enable women to make choices on their care. That’s what we want for everyone 

Just read it. Very interesting. I would argue furiously if I was an in patient and anyone tried to take my insulin pump or cgm off me. Direct complaint to senior management if they even tried and I was able to do so. 

Hospitals and health professionals in general or unrelated care will typically understand the diabetes rule book - which is ok for generic ‘how it works’ but not for someone who is on a pump who has taken a few months to get your levels balanced on a pump - plus often needs tweaking.  Applying generic rules simply is not good enough to deprive someone of a working system if they already have a pump and are able to use it.

Visits to doctors ‘specialist’ nurses often results in their gaining useful information and insights as to diabetes, certainly I don’t get anything out of it given my understanding is much greater than theirs. 

Even my pump consultant can’t necessarily offer much apart from fine tuning settings and control options, she is fully aware that I know best how my body works and reacts to insulin given I’ve been administering it to myself since 1985.

It really is frightening prospect as a diabetic to think that your hard work could be undone by someone with no practical working knowledge of diabetes and their ‘attitude’ to anyone who actually does know better than them.
 

posted in response to my Facebook post by my cousin, Steve Smith

Awful to hear your experience and thank you for sharing @Teresa1. I agree with @Exonian. The Campaign is fantastic and unites so many women who have had dreadful experiences. It is gaslighting when you’re prevented/persuaded not to have the option of GA that is clearly part of RCOG guidance. Services should be there to support women’s choice. It’s their right.

Hi Leo, that's a very good question and it would be great to get some discussion going about this. I met yesterday with some primary care patient safety leads. I'm about to write to them so will add you question and invite them to respond.

Thanks Helen