Lost between primary and secondary care
This is a short personal story about a broken health system experience this week.
On Tuesday I had a phone consultation with Gastroenterology in my local NHS trust. This has been in my diary for months and is a follow up to tests I had done in hospital in June 2023 (almost a year ago). At the time I was told everything was fine and, importantly, that there was nothing major to worry about.
The phone consultation was with a consultant who seemed very knowledgeable, and they talked through my tests last year, telling me again that everything was fine. They then looked at my blood test results on the system. These were taken in January 2023, so 16 months ago. It was these blood tests that meant my GP originally referred me to Gastroenterology for more tests.
The consultant on the phone told me he was “shocked” that my GP hadn’t done anything about my low iron levels – “low ferritin” on a blood test. In their opinion my iron count was too low and I should have been put on some sort of iron therapy by my GP at the time.
By this point I could feel myself becoming anxious. Had something important been missed? Had I not been treated correctly? Should I have advocated for myself more at the time?
The outcome of the phone call was that the consultant wanted me to get my bloods redone and that they would put a note on “the system” – they specifically said they wanted to flag what we’d discussed to my GP. They also told me if my iron levels were still low they might want to refer me for further Gastroenterology hospital tests.
We ended the call by confirming that I would be able to get my blood taken at a choice of 2 hospitals (neither in my town), or by going back to my GP.
I remembered to double check and ask whether the note on the “system” would be something my GP would have access straight away. The consultant confirmed it would be – they were putting the note on the system right now.
The call ended and I realised I had no details of who the consultant was … I think they quickly said their name at the start of the call, but I missed that, or didn’t think to write it down. There’s no record of the phone call anywhere like the NHS App.
Either way, I knew the next step was to call my GP to book a blood test. So I did.
The problem was the GP receptionist had no note from the consultant on their systems and they were adamant that they didn’t do hospital bloods. After a conversation where I insisted I had been directed back to them, and where I insisted that consultant has promised me they were sending a note to my GP, we agreed I could call back in 2 days as “sometimes systems take a while to update, or for things to come through.”
This was Tuesday morning. On Thursday afternoon I called the GP surgery back again. I should say at this point that calling my GP is not an easy thing to do. You have to listen to all the attempts to signpost you online to get non urgent help. It’s then a case of joining the queue to speak to someone.
Eventually, at the second time of asking, the GP surgery still had no note from Gastroenterology, and continued to advise that they couldn’t do hospital bloods. They gave me a number for Gastroenterology and advised I should try contacting them directly.
The Gastroenterology department at my hospital weren’t answering the phone. In fact, they have a system where they ask you to leave your name, NHS number, and mobile number on an answering machine before they’ll contact you back. Friday morning, and I’ve not yet heard back.
Why have I felt the need to share this story? Because I’m stuck in a broken system between primary and secondary care. I don’t know who to call next or how to progress my treatment and care.
I don’t feel like I’m at serious risk here, but this experience has been extremely frustrating as well as time consuming. A system simply doesn’t work well enough if it depends on individuals to navigate their own way through care. The user need here is more than just access to a blood test, it’s also about the trust and assurance someone has in knowing that they are receiving appropriate care in a timely way.
It’s these types of scenarios where things can get missed or treatment gets delayed. We do a disservice to the people in our health systems who deliver brilliant compassionate care and support, but only once patients find a way past broken technology, infrastructure and service design.
Everyone has a broken health system story
Whenever I share a story like this people respond with their own stories. It seems we all have a broken health system experience, or someone close to us does.
No system should be dependent on self-advocacy or needing someone to advocate on your behalf. A system shouldn’t need deciphering or detective work to work out what you need to do, or where you need to go next.
We have to design better systems. We can design better systems, but we have to think about interoperability, IT choices, and the human impact of our technology and channel choices. Most importantly, we have to ask what happens when people get lost, confused, or just reach a dead end?
Maybe there is progress here already? The NHS App is a brilliant start for someone comfortable with digital services. It’s great how it now lets me manage prescriptions as well as letting me see my GP record. But while primary and secondary care will always be human systems, right now, they’re fragile systems, held together by the people who answer the phones, manually enter and transfer data, and who do their best to connect the pieces of patient care.
Update
I eventually got a call back from Gastroenterology – about 24 hours after my answerphone message. After asking them to check, it turns out there was a letter for my GP but it hadn’t been put on their systems yet – there was a backlog and they were behind. They also said they would email me the letter, just in case. The person I spoke to was very helpful and I was advised to get the bloods done at the hospital on this phone call – my local hospital was now offered as an option. After more discussion on the phone they then clarified that it’s a case of following up with my GP on treatment once the blood tests are back.
So the system just about held up in the end but thanks to the intervention and help of a person who went out of their way to help me join the pieces of my patient experience.
This is my blog where I’ve been writing for 20 years. You can follow all of my posts by subscribing to this RSS feed. You can also find me on Bluesky and LinkedIn.