Elizabeth's story

Our NHS is woefully underfunded and in crisis. I’ve seen it. I’m scared because people in power have seen it, too, but they don’t seem to be doing anything about it.

Photo credit: Erin Lubin for T1International

My name is Liz. As a person who lives with multiple health conditions, the NHS has been literally a lifesaver to me on more than one occasion. I receive my insulin, supplies and diabetes treatment through the system, and I’m lucky to have access to some of the latest technology to help make what is at times a debilitating chronic disease more manageable. In 2018 I was diagnosed with thyroid cancer and underwent multiple surgeries and treatments, supported by the NHS along the way. Needless to say, I’m all too familiar with the healthcare system here, having been a part of it for over a decade, since I moved from the United States.

But recently, I’ve experienced first-hand how broken our NHS is and how truly terrifying it is that so few people in power seem to care. I developed a pretty intense case of Urticaria, more commonly known as hives. At first, I wasn’t too concerned. It had happened to me once before in 2018 and after several weeks of taking antihistamines, they faded. However, a couple weeks in and things were not getting better. I tried getting an appointment with a GP to get the same medication that had worked for me the last time. I was told there were no appointments and was signposted to my local minor injuries unit. 

Despite making an appointment, my wait time was several hours and when I finally saw a nurse, she was kind, but basically told me I needed to see a GP. I told her I’d love to be able to do that! Another week later, I was able to see a nurse practitioner at my local GP offices, but was also told that seeing the GP would be the best route. I finally got some different antihistamines but things continued to get worse. I again found myself heading to the minor injuries unit for support because the hives were appearing on my neck nightly, causing a cough and what felt like possible throat swelling. 

Throughout my hives nightmare, I was repeatedly told if I had any signs of anaphylaxis whatsoever, I needed to get immediate help. The strange feelings in my throat seemed to be signs…but despite getting to the minor injuries unit before they closed, I was told they had to close early due to influx of patients and a lack of capacity. 

I was following the system and the pathways that I was being told to, but it was not working. Every time I followed instructions to go somewhere or seek care or advice at one place or another, I was basically told I should be somewhere else and I was also wasting valuable time of the NHS staff who have so many other crises to deal with. 

I finally managed to get a GP appointment and got some more new medication. But after hours, my symptoms continued to worsen. One night, the hives were so bad on my face that my eyes were nearly closing up and my lips were so swollen it looked like I’d had some cosmetic work done that had gone wrong! I called 111 for advice, and was told that I should go to A&E. 

At the hospital, I waited maybe an hour to be seen initially, and it was clear that because I wasn’t actively struggling to breathe (though mentioned the strange feelings in my throat and mouth) I was deprioritised. I went to a waiting area that was literally running out of chairs. People were standing and squatting, while many others with IVs connected to their arms were sitting in chairs (rather than lying down in beds where they should be) and looked like they had been waiting for a long time. 

Four hours in, my partner managed to grab a nurse to ask how much longer it might be until I could be seen. My hives were not worsening, but hadn’t gone away yet either. He was told that it would be another three hours at least, and more urgent cases continued to come in. We knew we could have been there for countless more hours and having been simply guided back to the GP at the minor injuries unit, we decided to go home. 

I’m lucky that, in the end, my situation was not anaphylaxis. I’m lucky that I eventually got to see the GP again who prescribed me an epipen for emergencies like that. I’m lucky that my hives have calmed down. But I still don't have any answers and considering all the pressures the NHS and its staff are under, I’m not surprised that no one is too concerned about the cause of my hives or how to prevent them again.

Mostly, I’m worried about all those people who had possibly more urgent and dire health issues that may not have been treated in time.

As we move closer to a General Election this year, so far none of the main parties are offering real solutions to the NHS crisis. We need increased investment in NHS services, fair pay for all staff, and we must put an end to privatising of NHS services. Having lived in the United States, a fully privatised system, I can tell you that the best care is only for those who can afford it — and the costs are outrageous. We cannot keep moving to a tiered system where the rich get good care and those who cannot afford it struggle and suffer. We are already seeing that happen now, and it is scary. We must take this seriously because it’s up to us to maximise the pressure on our leaders to act. 

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Elizabeth Pfiester is the Founder & Executive Director of T1International, a global charity fighting for the health rights of people living with and impacted by diabetes.