It was a fairly normal weekday and I was mid my physio session in the gym. Decanted from my wheelchair onto a plinth I was manfully practising just trying to sit upright on the side of it without either collapsing backwards or toppling off it onto my face. Of such things does ‘exercise’ consist of when you only have control of your muscles to just below the shoulders. Into this scenario entered my consultant followed by a little shoal of junior doctors whom he was introducing to the spinal unit and lecturing on our various injuries. He spotted me and proceeded over, taking up a stance right beside my plinth with his back to me and facing his eager acolytes who formed a semi-circle round him. Consulting his notes, he ran through my injury – blah blah, horse fall, blah blah C6/7 incomplete, blah etc. The acolytes stared at me curiously as he did so then, as he reached the end, one of them asked him “Will she ever walk again?”. My consultant answered unhesitatingly and firmly, as though it was a very stupid question. “No” he said, “This one has no hope of recovery.”
Less than three feet from him, “This one” gave his turned back my best death ray stare and contemplated saying something. I’m not normally the kind of person who is short of words, especially not of the four letter variety when required but, to be honest, I was just so gobsmacked that I couldn’t actually choose what to say out of my various options before my consultant marched off to the next plinth to treat another of his patients like a piece of furniture with his unique brand of callous hopelessness. I’m sorry to have to report that his fellow consultant was much the same. Faced with nearly twenty of us at a talk which was ostensibly about spasms, he spent the first half an hour labouring the point that none of us would ever get out of our wheelchairs unless we had been able to move our toes within six weeks of our injury. He told us that the first recorded case of spinal cord injury had been in found in Egyptian hieroglyphs that were thousands of years old and, in the thousands of years that had passed since, no-one had found a cure for paralysis and nobody would. At that time there had also been a recent Panorama programme about a man who had his stem cells harvested, grown from his own olfactory gland and replanted into his severed spinal cord. The patient had made some recovery along with years of intensive physio but this consultant dismissed the whole programme, telling us that the operation ‘hadn’t worked’ and that, essentially, the whole documentary was nonsense.
As this tirade went on I watched the heads of my fellow inmates drop and the atmosphere in the room became understandably very low. None of us were expecting miracles and we knew the odds were not in our favour but all of us were recovering from severe trauma that had blown apart our lives and this approach was literally sapping us of the will to live never mind make any effort with our rehabilitation. Later, I spoke to someone connected with this stem cell research and recounted the consultant’s criticisms. They told me that, from the few details I supplied about numbers of participants, it appeared that he had confused a previous trial they had done with the current one. I had already found it extraordinary that he would, unnecessarily and unprompted, choose to torpedo this small bit of promising research in front of the whole unit but to do so without even having the facts straight beggars belief.
So, with the distance of several years not to mention the huge advances that have been made in the field since, here’s my take on the situation now.
First, I think it is nothing short of an absolute disgrace that our spinal consultants treated us in this way. Their attitude and approach not only lacked the barest basics of bedside manner but was, I believe, genuinely harmful. I understand that there is a principle of not holding out false hope and that the sooner patients accept their injury the quicker they can begin to adapt and embrace a new type of life but there is a world of difference between false hope and no hope. Additionally there is no excuse for treating patients as if they they are unfeeling automatons rather than recently traumatised human beings.
Second, our consultants were far from infallible. There were several inmates, even just during my stay in hospital, who had been told they would never walk again and who proceeded to leave the hospital walking on their crutches. There were also, unfortunately, some patients who were told they should recover quite a lot of function and never did. The fact is spinal injuries are highly complex and it’s incredibly difficult to be certain of anything with them. We were also told that any recovery we would make would happen in the 18 months after our injury or not at all. Many physios and patients I’ve met since have debunked this robustly which leads me onto my third point.
Third, continuing physio and exercise is critical both to your mental and physical health post SCI. It helps with the upper body strength you need to move about and perform everyday tasks, it challenges muscles to improve and function if they can, it helps with blood flow and pressure relief, preventing pressure sores. It keeps your weight down as gaining weight only worsens immobility and makes everything more difficult and it helps maintain bone density. However, working out is sometimes difficult enough to motivate yourself to do when you are fully able. To motivate yourself when you are paralysed is a whole other kettle of fish so if some spinal consultant tells you that you are a hopeless case and nothing you do will make any difference to your recovery, it destroys motivation. Several of my fellow inmates basically gave up following their helpful talk and spent the rest of their supposed rehab time sitting in bed or down in the canteen.
Finally, I would say that I’m sure the majority of spinal consultants treat their SCI patients with respect, empathy and compassion. However, as my experience has shown, there are those that don’t and other horror stories abound on injury forums, so mine is not an isolated example. Personally I’d love to see the following:
This approach – “Hello. You’ve (or, alternatively if you are like my consultant you could substitute the pronoun ‘it’ here) got a spinal cord injury so it’s time to abandon all hope. There’s no cure, there never has been a cure and despite what you might see in the media, there never will be a cure so get used to the idea that you will never walk again and will always be in this wheelchair. Here is a long list of all the problems you are going to encounter with this injury. The sooner you accept all this the easier it will be”
become this approach:
“Hello you’ve got a spinal cord injury. These injuries are very complex so we can’t be definitive about any recovery. As it stands right now, we’re sorry to say that the prognosis isn’t good and there is a long list of complications that come with this type of injury. However what we CAN say is that both your chances of any recovery and of lessening the impact of complications will be helped by working hard at your hospital physio and, after discharge, taking regular exercise. This will also help you make the most of the function you do have and be in the best shape to take advantage of any medical advances that may happen in the future.”