{"id":48209,"date":"2020-08-04T21:58:08","date_gmt":"2020-08-04T20:58:08","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=48209"},"modified":"2020-08-14T15:25:28","modified_gmt":"2020-08-14T14:25:28","slug":"ceinwen-giles-logistic-toxicity-in-time-of-covid-19","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/08\/04\/ceinwen-giles-logistic-toxicity-in-time-of-covid-19\/","title":{"rendered":"Ceinwen Giles: Logistic toxicity in time of covid-19"},"content":{"rendered":"

While the physical toxicity of a disease is well recognised, little gets said about the exhausting administrative burden that patients face<\/span><\/p>\n

<\/p>\n

\"ceinwen_giles2\"<\/a><\/p>\n

In the times <\/span>Before Coronavirus<\/span><\/i>, 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.\u00a0<\/span><\/p>\n

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.\u00a0<\/span><\/p>\n

I shifted to \u201chome therapy\u201d 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\u2019t like needles?\u00a0<\/span><\/p>\n

I also have to organise a drop of medicines and materials via email or phone, and double check them when they arrive (it\u2019s not unusual for the delivery to be short). Last night at 11:45pm I realised I hadn\u2019t 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.<\/span><\/p>\n

\u201cWe\u2019ll have to send you a vial for the blood test\u201d, my nurse emailed. \u201cTake it to your GP and then post it back.\u201d\u00a0<\/span><\/p>\n

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.<\/span><\/p>\n

Last year, I moved. I should have changed GPs but I hadn\u2019t had the chance and then the pandemic hit.\u00a0<\/span><\/p>\n

\u201cWe can\u2019t change your address on our system,\u201d my immunology nurse told me when I discovered the hospital had my old address and couldn\u2019t send the vial for the blood test. \u201cIt\u2019s linked to your GP surgery, so you need to talk to them.\u201d\u00a0<\/span><\/p>\n

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\u2019t. Not one person I spoke to about this seemed either surprised or outraged (I was both).\u00a0<\/span><\/p>\n

I emailed my GP surgery to ask if they could change my address while I waited to switch GPs. No dice<\/a>. I needed a new GP. Luckily, the GP surgery I\u2019d planned to join now allows for you to join online and that went relatively smoothly.<\/span><\/p>\n

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.\u00a0<\/span><\/p>\n

\u201cBe sure to be by the phone on either side of the time,\u201d the receptionist told me. The GP phoned <\/span>an hour<\/span><\/i> early<\/span><\/i> and seemed surprised that I was surprised. In any case, the doctor recommended I attend a \u201cshielders\u2019 phlebotomy service\u201d at the local hospital.\u00a0<\/span><\/p>\n

\u201cYou have the form?\u201d the GP asked.<\/span><\/p>\n

\u201cThe form?\u201d I asked back.<\/span><\/p>\n

\u201cThe vial should have come with a form\u201d, she replied. No form had been provided.\u00a0<\/span><\/p>\n

This caused some confusion, but by the end of the call she\u2019d put in a request for me to go to the phlebotomy service. They called me the next day to book an appointment.<\/span><\/p>\n

\u201cYou have the form?\u201d, the receptionist asked.<\/span><\/p>\n

\u201cNo\u201d, I replied. \u201cNo form\u201d.<\/span><\/p>\n

\u201cNO FORM?\u201d, she said, sounding confused. \u201cI\u2019m going to have to call you back\u201d.<\/span><\/p>\n

Half an hour later I received a call telling me that I could come in at 10:30am the next morning.<\/span>\u00a0<\/span><\/i><\/p>\n

\u201cI\u2019ve made a note about the form\u201d, the receptionist said.<\/span><\/p>\n

Arriving the next morning at the hospital I was ushered into a room for my test.<\/span><\/p>\n

\u201cYou have the form?\u201d, the nurse asked me.<\/span><\/p>\n

I explained, again, that <\/span>I\u2019d never been given a form<\/span><\/i>. To this day, I don\u2019t know what form they were looking for.<\/span><\/p>\n

Having finally filled the vial, I needed to post it. As a shielder, the post office isn\u2019t high on my list of places to visit so I had to get my husband to post it for me.<\/span><\/p>\n

\u201cYou want me to put <\/span>a vial of your blood in the post<\/span><\/i>?\u201d, he asked incredulously. \u201cIs that allowed?\u201d<\/span><\/p>\n

Assured that it apparently <\/span>is<\/span><\/i> allowed, he went off, returning an hour later, having sent the vial by \u201csigned for\u201d delivery. He felt slightly revolted. I felt like I\u2019d reached the summit of a mountain.\u00a0<\/span><\/p>\n

I recently came across the term \u201clogistic toxicity\u201d to describe the administrative burden of healthcare<\/span>. While the physical toxicity of a disease and treatments is well recognised, very little gets said about the exhausting administrative burden that patients face.\u00a0<\/span><\/p>\n

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\u2019s not nothing.\u00a0<\/span><\/p>\n

Some of the changes we\u2019re 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\u2014and it\u2019s increasingly recognised that patients and patient organisations were shut out of decision-making and planning in the early stages of the pandemic<\/span>. 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.\u00a0<\/span><\/p>\n

Ceinwen Giles<\/i><\/b> is a director at Shine Cancer Support and a trustee of the Point of Care Foundation.<\/span><\/i><\/p>\n

Competing interests<\/i><\/b>: See a declaration of interests<\/a> on bmj.com<\/span><\/i><\/p>\n","protected":false},"excerpt":{"rendered":"

While the physical toxicity of a disease is well recognised, little gets said about the exhausting administrative burden that patients face […]<\/p>\n

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