While the physical toxicity of a disease is well recognised, little gets said about the exhausting administrative burden that patients face
In the times Before Coronavirus, I attended a hospital in north west London every four weeks for an immunoglobulin infusion. Every third month, I would have a quick blood test. These visits to the hospital were an inconvenience, but one I live with as a result of a chronic immune deficiency.
As you might expect, this routine has changed since the pandemic hit. While there much talk about how the NHS has embraced change and moved services to digital, one thing not talked about is the administrative burden that has shifted from the medical system onto patients. Indeed, what was once an easy monthly appointment has turned into something approaching a part-time job.
I shifted to “home therapy” at the end of March to avoid going into a hospital that was treating covid-19 patients. My once-a-month infusion is now five weekly sub-cutaneous injections to the stomach. Have I mentioned that I don’t like needles?
I also have to organise a drop of medicines and materials via email or phone, and double check them when they arrive (it’s not unusual for the delivery to be short). Last night at 11:45pm I realised I hadn’t done my infusion. I put it off until today but that means I need to double up on the injections today. As inconvenient as I find these infusions, I was unprepared for the Herculean efforts that a blood test would require.
“We’ll have to send you a vial for the blood test”, my nurse emailed. “Take it to your GP and then post it back.”
The postage of my blood was necessary because I live in south east London and there is apparently no way for a blood test to be done south of the river and have it shared with the hospital in the north. And that was just the start.
Last year, I moved. I should have changed GPs but I hadn’t had the chance and then the pandemic hit.
“We can’t change your address on our system,” my immunology nurse told me when I discovered the hospital had my old address and couldn’t send the vial for the blood test. “It’s linked to your GP surgery, so you need to talk to them.”
I was more than a little surprised that my address is part of a linked-up system, but that blood tests and medical records aren’t. Not one person I spoke to about this seemed either surprised or outraged (I was both).
I emailed my GP surgery to ask if they could change my address while I waited to switch GPs. No dice. I needed a new GP. Luckily, the GP surgery I’d planned to join now allows for you to join online and that went relatively smoothly.
Having successfully both switched GPs and received the vial, I now needed to get my blood into the vial. I phone the GP on a Friday and booked an appointment at 3:30pm on Monday.
“Be sure to be by the phone on either side of the time,” the receptionist told me. The GP phoned an hour early and seemed surprised that I was surprised. In any case, the doctor recommended I attend a “shielders’ phlebotomy service” at the local hospital.
“You have the form?” the GP asked.
“The form?” I asked back.
“The vial should have come with a form”, she replied. No form had been provided.
This caused some confusion, but by the end of the call she’d put in a request for me to go to the phlebotomy service. They called me the next day to book an appointment.
“You have the form?”, the receptionist asked.
“No”, I replied. “No form”.
“NO FORM?”, she said, sounding confused. “I’m going to have to call you back”.
Half an hour later I received a call telling me that I could come in at 10:30am the next morning.
“I’ve made a note about the form”, the receptionist said.
Arriving the next morning at the hospital I was ushered into a room for my test.
“You have the form?”, the nurse asked me.
I explained, again, that I’d never been given a form. To this day, I don’t know what form they were looking for.
Having finally filled the vial, I needed to post it. As a shielder, the post office isn’t high on my list of places to visit so I had to get my husband to post it for me.
“You want me to put a vial of your blood in the post?”, he asked incredulously. “Is that allowed?”
Assured that it apparently is allowed, he went off, returning an hour later, having sent the vial by “signed for” delivery. He felt slightly revolted. I felt like I’d reached the summit of a mountain.
I recently came across the term “logistic toxicity” to describe the administrative burden of healthcare. While the physical toxicity of a disease and treatments is well recognised, very little gets said about the exhausting administrative burden that patients face.
It may have been the right decision to shift to home therapy, but what was once a one-off appointment was replaced this month by: two emails about medical supplies, delivery and storage of those supplies, 25 sub-cutaneous infusions, a switch of GPs, a GP appointment, a phlebotomy appointment, and a visit by my husband to the post office. That’s not nothing.
Some of the changes we’re seeing within the NHS are undoubtedly improving the system. However, most healthcare professionals only ever see their one small part of the system, not the complex web that patients have to navigate—and it’s increasingly recognised that patients and patient organisations were shut out of decision-making and planning in the early stages of the pandemic. If we are going to rebuild a better health system post-covid, we need one that works for everyone. For that to happen, the burden of administration on patients, as well as treatment, needs to be part of the conversation.
Ceinwen Giles is a director at Shine Cancer Support and a trustee of the Point of Care Foundation.
Competing interests: See a declaration of interests on bmj.com