When "no" is not an option

As a follow-on from my previous post, I want to share an experience I had in the hospital. Be warned this may be upsetting (powerlessness, medical procedures), so please consider first whether you wish to read this post or not.

I had one of the most terrifying moments of my life on my third day in hospital, and here I am not exaggerating. I consider myself highly privileged that this is a feeling I haven't experienced until now: I know that many, many people have, both in a medical context and other situations.


I'd had a piece of equipment fitted on AMU on Tuesday. This was painful, upsetting and far worse than I had imagined it would be, but I had been warned they are not pleasant to have fitted, so I coped pretty well. Even when I could hardly utter a word afterwards, and move/breathe little without coughing. The doctor didn't seem confident and sure enough after a multiple-hour wait and a move up to my ward, as soon as eyes were cast on the positioning x-ray it was out as quick as you can say Jack Robinson.

I prepared myself for the re-application (sooner than I thought - I'd originally been told it would be the following day, but with good support I coped when it was sprung on me that it would be immediate), this time by a reassuring, experienced nurse who was very calm even though it was really difficult to get placed, took his time, mixed humour with understanding and we all got through it together. It was still painful and traumatic but after doubt about the position imagine the party in Side Room 28 after x-ray finally confirmed it was correctly placed. Three people have never celebrated bodily fluids so enthusiastically!

I went to bed happy that Tuesday night. The equipment was finally sorted, I was on the right ward that knew how to do things, the nursing and care staff were super attentive, supportive, helpful, and enabled me to take on challenges I didn't think I could achieve. What a healing environment. This was beginning of the way up. I slept.

Just before waking, I dreamt I pulled the equipment out and it had to be reinserted. The panic was real. I woke. The panic had faded but I was a little unsettled by the whole experience of being here, in hospital, monochrome, bright lights, machines and equipment. And the kind night staff from the night before had finished their shift. I managed to keep my anxiety under control. Then I pointed out the leakage from my new equipment overnight and a fault was discovered. "It'll have to come out."


Well that was the end of that. I burst into tears of panic. Nobody was going near me again thank you very much. There had to be some other way. An unknown doctor came in with a friend early on morning ward round to explain to me. "It's not supposed to hurt" (Ah, I'm glad you told me that - it mustn't have hurt after all, my mistake...??!) "It's very unusual to have one damaged, you've just been very unlucky" (I'm glad. Does that solve the problem though?) All I could do was sit and sob and refuse and make a request that I see the doctor from the Liaison team before they did anything. I am so unbelievably glad my mental health team had drilled into me that I could do that. The doctors left me in shutdown, simply saying "We'll come back after ward round and do it then."

It was at that point that I realised I had no choice in the matter. If I kept on saying no, I would simply be presented with the Mental Capacity Act and the procedure would go ahead anyway. I have never experienced such a feeling in my life. Complete powerlessness. Utter terror. No escape. I am a compliant person and if I get round to saying no there is a mighty good reason. Such as "I don't see how I can actually survive that happening again." But nobody knew that, and even if they had it wouldn't have made a jot of difference.

How often do our children with complex medical needs experience this? What does that do to a person, to repeatedly have to keep living through that? Babies are operated on without anaesthetic. Adults and children with learning and physical disabilities are abused. Men and women are assaulted.

I was lucky. My request to see the Liaison team worked not because she said anything different, but it bought me about 4 hours of processing time. I managed to calm myself and face the idea of allowing another traumatic procedure. She also made the suggestion of a tiny dose of Lorazepam to ease the process, which nobody else had offered (although I do note that when the doctor came to do the procedure later he didn't offer it or wait for my request as she had said but explained that he would bring it and I would take it... I suppose he probably had a rather inaccurate understanding of me as the only time he'd ever met me previously was in meltdown that morning...). Turns out, third time lucky. It worked how it was supposed to. Not comfortable, but quick and pretty easily bearable once complete. Others are less lucky and for that reason I will not forget those moments of utter powerlessness and panic.