"Disappointed by the level of patient care"

Following a year of intermittent symptoms with increasing frequency throughout 2019, in January 2020 I was admitted to hospital with profuse diarrhoea. It was day and night, with the consistency of dirty water, up to 30 times per 24 hours. I spent four weeks in ward 14 undergoing tests, most of which came back inconclusive, before being discharged, if anything worse than when I was admitted, with a diagnosis of IBS. A week later, I was readmitted, this time for five weeks which was predominantly spent in ward 10 due to my adrenal insufficiency, but with the involvement of the same gastroenterology team I’d had during my stay in ward 14. Again, I had numerous tests prior to being discharged, no better, at the beginning of the Covid-19 pandemic. As well as being discharged from my inpatient bed I was also discharged from gastroenterology with no outpatient follow-up deemed by the specialists to be required.

The year to follow was the most difficult year of my life. The profuse diarrhoea continued literally every day and throughout the night without fail for a full 15 months. It was so debilitating that I struggled to leave the house. I knew that what was going on was more serious than IBS but, despite countless calls with my GPs and numerous hospital admissions throughout 2020, I found myself no further forwards with a resolution of my symptoms. I was told time and time again that I had IBS. I tried all of the pharmaceutical IBS remedies and the dietary and lifestyle modifications the doctors recommended but nothing helped.

In March 2021 was admitted to A&E. My bowel had become so diseased that it had perforated. I had emergency surgery the same day, losing my colon and ending up with an ileostomy. I am exceptionally thankful to the surgical team who not only saved my life but also gave me some quality of life back, but obviously I wonder how on earth it got from “IBS” to losing my colon.

I have a copy of my medical notes relating to my admissions to hospital from January to March 2020 and they make interesting reading.

Looking at my notes I can, to some extent, see why it was so difficult for me to get help with my illness from in the year following my discharge from gastroenterology at the RAH up until the point of needing surgery. There are two extensive letters from gastroenterology to my GPs and other consultants which offer ‘medical summaries’ which I believe have significantly compromised my ongoing care, undermining my credibility as a patient by implying doubt over my account of my symptoms and medical history, and by providing a summary of my medical tests which, in my view, have been biased towards supporting an IBS diagnosis by excluding key facts relating to my condition.

Over the year prior to surgery, each time I have spoken to my GP, the A&E and acute medical doctors and my other consultants, they have consistently referred back to these letters. Even just an hour before the surgeons got involved, one of the RAH gastroenterology team was still making reference to these letters and their description of extensive normal investigations, and it was yet another frustrating conversation about "IBS". I consider myself very lucky that the radiography department called the ward to alert them to the perforation evident on my x-rays, which had been routinely ordered by A&E that morning, and that the medical team on shift in AMU took prompt action in starting me on antibiotics and getting the surgeons involved immediately. The gastroenterologists were getting ready to send me home.

With regards to undermining my credibility as patient, I was surprised to see that my consultant had noted my weight in her letters as “stable” despite my weight having been documented in an NHS hospital at 66kg in October 2019 and 54kg in March 2020, a 12kg loss in just 5 months, which I highlighted at the time to the hospital was far from “stable”.

I was also surprised to read the wording used by the consultant gastroenterologist in charge of my care not only in their letters but also throughout my inpatient medical notes. I quote "apparent diarrhoea" as an example. I cannot understand why there was any uncertainty regarding my symptoms considering that my bowel output was being measured accurately by the nursing team. Whether or not this tone was intended, I think it is reasonable to feel that this paints a picture of someone who is being disbelieved by their medics and, certainly during my time in Wards 10 & 14 in January/February 2020, I saw myself being labelled as someone who was excessively anxious about my health when in actual fact I clearly had a genuine medical problem which needed to be addressed.

When I highlight my concerns that the medical facts detailed in the letters were biased, I was shocked to see that extensive pnuematosis coli (the identified cause of my perforation) was documented on numerous occasions as far back as January 2020. I had been told time and time again, both directly by the RAH gastroenterologists and indirectly by other healthcare professionals taking their lead from the gastroenterology summary letters, that I'd had extensive investigations which had revealed nothing conclusive. I find it interesting that detail is written about some very specialist tests to rule out rare causes of diarrhoea, yet numerous abnormal x-rays revealing the very issue which led to my perforation were completely absent from all of the medical summaries of my investigations.

Overall, I am exceptionally disappointed by the level of patient care offered by the gastroenterology team at the RAH. My concerns were completely dismissed, I was made to feel like a hypochondriac and after 15 months of incessant suffering, when told I was going to need major life changing surgery the overwhelming emotion was relief that finally someone was taking me seriously and offering me hope of feeling better.