Stephanie O'Donohue

My toddler had croup and developed very strained breathing so, being a Sunday, we called 111 and were sent to an out of hours gp based in a hospital.

They prescribed steroids, and told us we needed to start them straight away. We were told by the gp we couldn't get them from the hospital pharmacy because we had the wrong colour prescription. I'm assuming this was related to level of need but I don't know.

After driving to one pharmacy we were told the medication wasn't available and there was a shortage. We then called, or drove to, another seven pharmacies,  none of whom had it in stock. We were, however, told they had it in a slightly different form (can't remember the details) and that we would need to return to the gp to get a new prescription if we wanted that one. Three hours had past by this point.

Aware my toddlers breathing could potentially worsen and that we'd been advised to start the steroids immediately, I was quite concerned. I called the hospital and luckily we just caught the gp whose shift was finishing at noon. 

We had to drive back to the hospital, collect the new prescription and travel back to the pharmacy to get his medication. 

I was very fortunate that I have a car, a phone with credit, English is my first language, could pay the extortionate hospital parking fees (twice) and could do this three hour trip without having to bring several other children with me. Many do not have these privileges. It's a huge safety and equity issue. And I was actually able to get the medication eventually that day, many others seem to be facing issues that are leaving them without their prescriptions for weeks.

I have personal experience of a very painful IUD fitting (Mirena Coil). I was told to take a couple of paracetamol beforehand. I had no forewarning of the possibility of high levels of pain and for me it was absolutely excruciating. I screamed and swore out loud (those poor patients who must have heard me as they sat in the GP waiting area).

I was told to expect cramping but was totally uninformed about the impact afterwards in terms of feeling extremely shaky and tearful. I felt violated - due to the level of pain but also the fact no one had warned me of this possibility. I wasn't advised to bring someone with me. I actually had to go away for the weekend straight afterwards with friends but spent the whole time in bed, crying and genuinely traumatised by the event. This is very difficult for people to understand if they had a good experience. It's not about how well you 'cope' though, it's about different bodies having different physiological reactions. 

I have since requested my GP notes and there was no record or mention of my pain experience. I was never asked to rate it out of 10 or provide feedback. How can things improve of this feedback isn't being collected?

Not all women experience this level of pain and IUDs can be an excellent choice of contraception for many, but there needs to be more data collected to understand the extent of the issue and how many women are feel their pain was not adequately managed or responded to. There needs to be more investment into research to inform practice and to make sure women are being told of all of the benefits, risks and alternatives. So they can make the right choices for them. 

Patients need to feel empowered to say no at any point - this should be made very clear from the start. 

I spent years terrified of having to go back and have it removed. There is so much opportunity for improvement in this area, and some wonderful clinicians trying to change things and advocate for patients. I can't imagine it's pleasant being a health worker witnessing the sort of reaction I had. Everyone needs to work together to change this. 

This was a brilliant webinar, well worth watching. Clearly there is still a way to go but I think that identifying the gaps in clinical education and research will make a huge difference. For example, the lack of research into the pelvic nervous system in women.

I am also really interested in how all women can be empowered to speak up when things aren't clear within their medical appointments, to ask questions and to report incidences where they feel they have been dismissed to the detriment of their care or pain management. 

Some interesting stats in this news article. 

"The Royal College of GPs is calling for a national network of "post-Covid" clinics to help such people. But less than 12% of 86 NHS care commissioning groups asked by the BBC said they were running such services."

https://www.pslhub.org/blogs/entry/1288-coronavirus-long-covid-patients-need-treatment-programme-doctors-say/

I worked in internal communications for many years and this involved a lot of work around change (both culturally and in response to enforced change). I believe that for positive change to happen within large organisations, the following elements are needed:

• The leaders need to have time to truly understand the need for change and feel informed
• You need people with the tools and skills to communicate that knowledge to others with passion and influence (identify those who do and those who don't)
• Champions need to be identified at all (clinical and other) levels 
• One or two key objectives identified and prioritised to prevent it becoming an impossible task
• A very clear comms plan focusing on just a few repeated key messages that reach the right people in the right way at the right time (face-to-face is so important where possible)
• Regular check-ins with the champions and time allocated to this so that champions are not overwhelmed with an extra responsibility but instead feel inspired to act as an important driver in the change
• Admin and project management input

I believe that a patient safety specialist could actually come from any of the above areas (clinical, project management, comms, senior manager etc). 

No one individual will have the capacity or skill to do all of those points alone, effectively. What is important is that they are the type of person who is able to listen and learn from others and identify the team they need around them to give real change for safety a chance. Obviously this requires resource.... bullet points one and two may help inspire others to allocate resource.