It plugs gaps in patient information sheets, which would be improved by more input from patients, argues Tessa Richards

Thanks to skilled clinicians, I’m enjoying what remains of my nine lives. But the last few months have been bumpy. Urgent problems have led to four hospital admissions. Two to treat abdominal and lung metastases, a third for a tricky bit of coronary stenting, and a fourth to investigate post procedure shortness of breath. The interventions I had went well, but each was associated with severe, and worrying side effects that I was not forewarned about, although my Google searches uncovered that they are not uncommon.

Over the years I have undergone several operations and non invasive procedures. As a rule, the nature of the interventions has been well explained, as have the immediate risks and possible complications. But information on possible post procedure sequelae has been less detailed, and in some cases absent. Where information has been provided, my impression is that it reflects the serious complications that worry doctors, more than the concerns which patients may report. 

I remember the pain of going into acute urinary retention after being discharged following a laparotomy for an ectopic pregnancy aged 30, where I was not provided with any post operative information, nor a follow up appointment. While urinary retention may be unusual, concern on how removal of a fallopian tube may affect future fertility must be near universal. Back then there was no Google to turn to, so I read around and largely accepted I may not be able to have children; although I was later fortunate enough to have three.

After thoraco-abdominal surgery to remove a locally invasive adrenal cancer I spent a week in intensive care and a longer on a high dependency ward. Memories of this gruelling time, not all of them bad, left a deep impression. For years I kept the excellent information leaflet I was given.The physical journey back to health was an expected struggle and it was very reassuring to be advised that it’s not unusual for patients to experience a form of post traumatic stress syndrome; for I did. 

Whether post operative information leaflets should flag every possible short and long term complication and “side effect” in the way that the possible side effects of drugs are listed in package inserts is open to debate. But patients should surely be given information about side effects which are common and distressing even if they are not judged by doctors to be  “clinically significant” problems. 

The advice sheets I was given about the side effects of radiotherapy, which I underwent twice, were generic. As I Googled my way through the possible side effects of high dose abdominal radiotherapy, I became aware of site specific problems, and was later investigated and treated for a couple of these. 

The side effects of treatment I encountered most recently took me by surprise. Having undergone nanoknife ablation of an abdominal metastasis before, I anticipated some post procedure pain. But I was unprepared to experience, on day three, sudden severe pain, myalgia, nausea and vomiting, and a low grade fever; symptoms that lasted five days. I was worried something had gone badly wrong and turned to Google. My searches uncovered that I was suffering from classical post ablation syndrome.   

Two weeks later I had exactly the same symptoms three days after ablation of my lung metastasis. The experience was no less unpleasant, but I coped better. I knew I was experiencing a recognised, self-limiting condition, which occurs in around a third of patients.

Next up was the stenting procedure after which I left hospital on the same day. On my journey home I started to vomit. I later found out that I had been given morphine during the angioplasty which accounted for it, but it was the development of persistent chest pain which alarmed me. Again, thanks to Google, I learnt that I was probably experiencing “coronary stretch” pain (a self diagnosis which the consultant later agreed was most likely). Evidence suggests this occurs in over a third of patients in whom stents are placed. The post procedure information sheet did not mention this. 

One of the most informative articles I read on “coronary stretch” is in a book by Carolyn Thomas who heads an advocacy group for women with heart disease. Her experience of misdiagnosis spurred a mission to raise health professionals’ awareness that heart disease in women may be atypical and, as a result, treated suboptimally. An exert on coronary stretch is telling: 

“This is a common problem. Although the development of chest pain after coronary interventions may be benign, it is disturbing to patients, relatives and hospital staff.” 

“Disturbing? No kidding.“

I owe much to the doctors who found time in their incredibly busy schedules to give me life prolonging treatment. But my recent (and past) experience prompts thoughts about discharge information sheets. Best practice should surely dictate they are informed by patients as well as professionals. Advice on how to co-create information is provided by the Patient Information Forum.

Better information won’t stop patients Googling, but should allay fears. It might also reduce unnecessary use of services, for as my anxious husband found, the stock response to phone queries about post procedure problems is “If you are worried go to A&E.” 

Tessa Richards, The BMJ.

Competing interests: none declared.