The Crisis in Hospital Cancellations: How to Cope with Being Let Down.

My experiences

On Friday I was scheduled to have a life-changing operation for which I had been waiting for months. Since March 2018, I’ve had by far the worst flare up I’ve ever experienced and several months ago I officially ran out of treatments. With my list of complications quickly growing and my physical state declining, I was told that most conventional surgeries for Crohn’s Disease would not help me, so it was decided that I needed a total pan proctocolectomy. Obviously this news was a big deal and I spent ages mentally and emotionally preparing myself for the fact that October 18^th was the day that everything would change, that it could be the start of a new chapter of my life.

My mum and I live a fair distance from my hospital in London, so we paid to stay in hospital accommodation the night before my surgery so that I could do my bowel prep without having to sit in the car for too long afterwards. We arrived at the accommodation around midday and unpacked. I then spent that entire night in agonising pain and discomfort to prepare my body for surgery the next day. I then had to get up at around 4:30am so that I would have time to shower and get myself ready to be at the clinic by 7am.

We got there on time and, after an hour or so of waiting, I began the long list of pre-surgery meetings. First was the anaesthetist who explained the surgical risks and what to expect when I woke up, then my surgeon’s registrar who outlined the surgery and got me to sign all the consent forms, then a ward doctor who took my bloods, then a nurse who filled out a long admissions questionnaire, then another nurse who got me to take a pregnancy test, then one of my consultants who explained and signed me up for a research study involving my removed colon and finally, a stoma nurse who marked up my stomach for ileostomy sites. It was really happening. After months of waiting impatiently for this day, I felt ironically like it had crept up on me somewhat.

Having been separated from my parents, I sat alone waiting for about 4-5 hours contemplating everything that I was about to go through and making my little wishes that it would all go smoothly and that I would get through this. I had just put my headphones in, thinking that some relaxing music would help to calm me down, when my surgeon’s registrar reappeared. She told me that we had been waiting for a bed on the intensive care ward to become available but that none had and as a result, they wouldn’t be able to do my surgery today. I almost didn’t hear her at first. It was like my head took a second to catch up with my ears and I was completely blind sighted. Was this really happening?

She half-heartedly apologised and just kind of stared at me, as if she was waiting for some kind of reaction. I mean, what was I supposed to say? That moment was a bit of a blur to be honest, but I think “Are you kidding me?” probably slipped out. I then asked her what I was supposed to do now, and she just said that they would try and re-book me for next week, but that there was no guarantee that this wouldn’t happen again. She then quite briskly left me sitting on the bed, wondering what on earth had just happened. Was I just supposed to leave then? My parents had assumed that I’d already been taken down to surgery by this time, so I spent a good few minutes trying to overcome the awful signal in the hospital to phone them and tell them to come all the way back and get me.

Naturally, as the person who accompanies me to all my appointments and supports me through whatever my health entails, my mum was absolutely furious. I was just holding it together and keeping back the tears until I heard her walk down the corridor and start having a go at just about anyone she passed about how unwell I was and how unfair it was that they could do this to me. She then demanded that the registrar come back upstairs to talk to us, but we were just told the same thing that I had already heard and that if we would like to complain about the service, we could write a complaint card and put it in the box on the front desk with the others. Great. I didn’t say much in this conversation, at this point I really just wanted to leave. And that was that. We went back to the accommodation, re-packed everything we had un-packed the night before, waited for my dad to bring the car, re-loaded the car and I had to wait another 2- 2 ½ hours for us to get home again so that I had access to my Fresubin and could re-start the liquid diet that I thought I’d finally be shot of by then.

Once the dust had settled and I was back at home, I soon realised that I didn’t have enough Fresubin to last me until the revised surgery date given that I hadn’t ordered any more as I was under the impression that Thursday 17^th October would be my last day taking it. My mum then had to rush to the pharmacy and put in an emergency prescription before calling up the accommodation owner in London and re-paying for us to stay the following week. We also had to re-arrange all the plans we had made for my dog to be looked after so that my mum could stay in London and be close by while I was recovering. As we speak it has been 4 days since I did the bowel prep (for no reason at all) and my system still hasn’t got over the effects. And all this trouble because there were no beds. I know it isn’t the ward staff’s fault that things like this happen, but no one seems to take responsibility or realise the real impact that cancellations have on patients, both physically and emotionally.

This wasn’t the first time it happened to me either. From December to late February I went through the very long and draining process of enrolling onto a clinical trial for Risankinumab. This seemed to be the only viable drug treatment left for me to try, so when I finally got given a date for my first infusion, I was over the moon. I had done everything the research team asked; I’d gone unmedicated for several months (which made me 100 x more unwell and removed my ability to walk yet again by bringing back my arthritis and erythema nodosum), I’d had all the scans, procedures and colonoscopies they wanted, I’d kept a daily patient diary for several months, I’d attended a whole array of appointments and I’d frequently had to starve myself for 4 days at a time to travel to London because my symptoms were so bad.

Nonetheless, when my mum and I drove all the way over there on the morning of the infusion, we waited for a couple of hours before receiving a phone call -of all things- telling us that they were “sorry” but the only person authorised to do the infusion was actually on holiday, so it would have to be rescheduled and I would have to do it all over again in a week or two. Seriously!? On holiday!? And nobody thought to check!? Then in another few months I had to wait alone for over 9 hours until I was taken down to theatre for my fistula surgery and I was told that they almost had to cancel that too, even though I was an urgent case and at a very high risk of septicaemia if made to wait any longer.

The facts

Unfortunately, situations like this seem to happen far too often and can be really devastating for patients and their families who have anticipated and prepared for something crucial to the health of the patient to be done. I did some research into the issue and found a 7-day snapshot study led by Professor Ramani Moonesinghe in 2017. Of 26,171 inpatient operations scheduled for between March 21^st and March 27^th of 2018, 3,724 were found to be cancelled or postponed on the day of surgery (Royal College of Anaesthetists, 2017).

Furthermore, in the first three months of 2018, approximately 25,475 operations were cancelled on the day of the procedure in England alone, the worst figure in recorded history (Independent, 2018). Subsequent reviews have found that patients requiring major surgery with overnight stays and those who require critical care beds (that would be me) are more likely to experience cancellations, with a lack of available ward beds being one of the biggest causes. I was also interested to discover that the UK has fewer hospital beds than many other comparable high-and middle-income countries which is a leading factor in this health service crisis (Independent, 2018).

How to cope if it happens to you

Even more unfortunate than these staggering figures is that patients often feel powerless in these circumstances. So, here are a few things to bear in mind if you fall victim to a cancellation. First of all, don’t just blindly accept that something has been cancelled without getting a reason. If they are going to cancel your appointment, surgery or treatment, (politely) demand to know why. It might even be a misunderstanding and if you ask about it and speak to the right person, it may well be sorted out on the day and resolved before you angrily storm out of the hospital.

Secondly, if whatever’s been cancelled is pretty major like a treatment or surgery, make sure you do complain. I know it can seem like no one is even remotely interested in your care in situations like this and it will take up even more of your time, but if no one ever complains about unacceptable standards of care, then nothing will ever change. Fill out a complain card, complete an NHS complaint form and try and get in touch with whoever’s in charge to discuss why you aren’t satisfied.

It’s also really important to know your rights. When an appointment is cancelled for clinical reasons i.e. you aren’t fit for surgery or new medical concerns arise, this is deemed “valid” by the NHS. If it is cancelled for a non-clinical reason, the NHS provides a list of these which it deems “valid”, including emergency situations or a lack of available beds like in my case. In this instance, the procedure or appointment should be re-booked within 28 days of the cancellation. You can read up on your rights regarding cancelled surgeries via the following link: https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-if-my-nhs-surgery-or-operation-is-cancelled-at-the-last-minute/.

As for dealing with the issue mentally and emotionally, I know how difficult this can be. You will probably feel a combination of disappointment, devastation, annoyance, anger, abandonment and impatience. It can be hard to know exactly how to react when you are given bad news like a cancellation, especially because patients (particularly on the NHS) tend to feel like they should be grateful for getting any free care and that if they show anger, they will simply be labelled the “difficult” patient. I personally resent this; just because we don’t pay for all our treatments and surgeries, it doesn’t mean that we should have to settle for sub-standard care.

But having said that, although there is certainly no shame in being upset, it is best to keep a clear head if you can. In my case, I knew if I carried on crying it would only make me feel worse and I didn’t want to sulk for the rest of the day. Plus, getting angry won’t solve the problem if it’s out of your hands and it may even make matters worse as staff may not fully listen to your point of view. What’s more, when you’re seeing red it’s very easy to lose sight of what you should be asking and finding out, like the new date of your re-scheduled procedure, where to go and how to prepare etc. And remember, it isn’t the ward staff’s fault, so don’t shoot the messenger! I would suggest taking a minute to compose yourself and gather your thoughts before seeking out the appropriate staff member and asking everything you need to know.

The most important thing is to constantly remind yourself of the big picture. When my surgery was cancelled, I was so caught up in the moment and the idea that my hospital had let me down that I lost sight of the fact that a one week delay probably wasn’t going to impact my recovery in the long run. I’d been living in this state of ill-health for over 9 months, I could survive another week. This doesn’t justify anything; I don’t think anyone deserves to have their appointment cancelled, no matter how urgent it is. But what it does do is help me accept the reality of the situation; that as soon as I’ve had my operation, I will no longer be thinking about how annoyed I was that it was delayed by a week, but instead that I am now hopefully on the road to recovery.

It’s all about perspective, just remind yourself that in the long run, a short delay isn’t going to make much difference to you and soon enough it will be a distant memory. Don’t give up hope and definitely don’t loose faith in your surgeons or doctors, in most cases they have absolutely nothing to do with cancellations and are just as inconvenienced and gutted as you are. I know for a fact that my surgeon was down in theatre ready to operate and waited roughly the same amount of time that I did before being told that it wasn’t going ahead. My consultant also emailed me immediately to apologise and let me know how upset she was for me. So, although it is challenging, try not to take cancellations personally. Keep your chin up and your fingers crossed that it will go ahead as soon as possible.

Have you had an operation or procedure cancelled? Comment below to share your story.