My experience in hospital as an ME patient
The care I received at a recent visit for a double hernia operation was very good, but it made me realise that the hospital could do more to make the event less traumatic for patients with ME and to help them cope better with the physical and emotional stress of having an operation, even if there is admittedly little evidence for how anaesthetic drugs might impact the condition. So, when I saw an advert on the ME Association website inviting people with ME to share their experience of having surgery and anaesthesia, I jumped at the opportunity to take part.
I was delighted to find out that my experience and that of others would be used for a collaborative patient information project between the ME Association and the Royal College of Anaesthetists. To start with, we were asked to take part in a focus group which was later used to draft a Q&A style resource with the aim of filling the gap in information for my patient community about what to expect and how to plan for surgery and anaesthesia. I have now been asked to share my story with you, RCoA members and working anaesthetists, and I hope it will be useful if you ever encounter a patient with ME/CFS or long COVID (the symptoms of which are similar to ME).
I have had ME for 13 years, during which time my wife and I have developed coping mechanisms to minimise the painful and unpleasant symptoms which can occur suddenly. ME is an invisible disease, unless very severe, and when I am capable of interacting with people I may appear completely healthy and ‘normal’. Looking back now, it must have been difficult for hospital staff to recognise that I may have required certain adjustments to help make my surgical journey more manageable for me and for them. What added to the challenge is that when I went for my preoperative assessment ME was not listed from the ‘do you suffer from’ list of medical conditions they had in front of them. This made it difficult to have my condition and any adjustments required added to my notes.
From years of interacting with the NHS and healthcare professionals, my experience is that there is still limited understanding of ME/CFS, despite new guidelines from NICE. This is understandable as, despite the rising number of people with the condition in the UK, it is not often that healthcare professionals come across patients with ME, with the exception perhaps of GPs. This is why it’s particularly important to listen to the patients and their families/partners as they are real experts in the condition and how it affects them.
I knew that I was going to be in for a bumpy ride when I arrived on the day of my surgery. Socialising for people with ME can be extremely tiring and I have to confess that I felt really overwhelmed by the amount of well-intentioned hospital staff who introduced themselves to me and the number of questions I was asked. Slower talking by staff helps ME patients to take in information and reduces the energy needed to understand it. The whole experience of being in hospital is a massive increase in the activity level for any ME patient. Even bright lights can be extremely tiring for us, so just bringing the blinds down and lowering the lights as much as feasibly possible can make a big difference.
The operation was a success, but I knew before going to sleep for the operation that the simple process of preparing me for the surgery had eaten into my very limited energy reserves and that I would pay for it when coming round from the anaesthetic. I think things got quite interesting for the nursing staff looking after me in recovery. Despite good care from them I suspect they were really puzzled as to why I was semi-conscious and hardly able to communicate. The brain fog meant that whatever I was saying could not always be trusted and I was so exhausted that I did not have the energy to speak. I also did not have the energy to eat and drink, although my body desperately needed sustenance as due to the fasting I had not eaten for over 20 hours and this is not ideal for people with ME.
What the recovery staff did not know is that I was experiencing what we ME patients refer to as a ‘crash’, medically known as post-exertional malaise, a state of deep and persistent fatigue affecting people with ME/CFS brought on by even the smallest amount of physical, mental and emotional activity.
In the end it was agreed that I would need to stay overnight as I was taking a long time to recover from the anaesthetic (heightened drug sensitivity is a well-recognised symptom in people with ME). When I texted my wife to say I would be staying in overnight she phoned the ward and spoke to a nurse because she was concerned that the staff caring for me might be unaware of my own particular ME symptoms and not know what was due to my ME as opposed to what was due to the operation itself. She also wanted to alert staff to my unusual behaviours while having a crash. She asked that I receive hourly observations and that some food and drink be readily available by my bedside as I would probably not remember that I could press a bell if I needed anything. She also explained that painkillers have a strong effect on me and that I normally receive adequate relief from half the ‘normal’ dose. There are over 30 different symptoms that can occur and the patient’s partner will know which ones to expect. They can provide an instant assessment of an ME ‘crash’, its progress and suitable care actions.
I am pleased to say that I eventually made a full recovery from the operation, but it took me a while, and probably longer than would be deemed normal. I hope what you will take away from my story is that: yes, ME is a complex and often misunderstood medical condition; that yes, every ME patient has his/her own unique pattern of energy levels and coping mechanisms, but that with good listening and good two-way communication, hospital teams, preoperative assessment staff and anaesthetists can make the small adjustments which can make a big difference to the experience of anaesthesia and surgery for these patients.
Kevin Coyne
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