During a lot of my hospital stays, I’ve been unable to communicate for a large majority of the time. Particularly at the beginning of my four year stint in hospital, this was a huge problem for me.
At these times, I feel patients in hospitals are at their most vulnerable. If you are not able to say how you are feeling or say when something is wrong, it becomes frightening. This can happen for many reasons, whether it is due to infections or general ill health. What happens when you are voiceless? The common thought is that if you cannot speak, you are not cognitively “there”. This can be entirely wrong but when you are voiceless, in my case, no one stopped to think. I became less of a person and more of an occupied bed number, not by what condition I had but simply the lack of my voice.
I can only speak of my own personal experience and the delicate skill of ‘people watching’! Whenever I pressed the bell to alert someone that I needed help, I would have a mixture of responses. It would go from the worse of verbal abuse, cursing me for being difficult to understand, to leaving me to go through a procedure on my own because I couldn’t voice that I needed them. From nice people taking the time to try and see what I needed, to those who would leave before I had managed to get everything. All problems of miscommunication. I never blamed the carers for this because I understood how incredibly difficult it was to have someone who couldn’t speak.
As soon as I had a learnt to speak again, I understood that most of the events that had happened to me was due to the enormous strain that the NHS is under. A carer couldn’t wait an extra ten minutes to allow me to understand what they were saying and for me to get across what I needed because they were needed elsewhere. I don’t condone any abuse and once I could, I reported it and action was taken.
My deep concern is for those whose voices don’t come back, the vulnerability of them cannot be mistaken as being frustrating for taking so long to find a method of communication. It’s between life and death. If a patient is unable to ask for a drink or buzz for food, how on earth are they suppose to get better. I was once on a busy stroke ward, a couple of years ago. It was horrendous to watch. The bay I was in was full of patients who couldn’t speak and were suffering with Locked In Syndrome. On ward round, the doctors would look at the patient’s catheter bag and say the lady urgently needed to drink more. The drink was left marginally out of her reach, she could not buzz for help. Her food was brought round and was left until it was cold before a carer came bustling around to feed her, moaned at her for not drinking enough, and had to rush off. Cold puréed food. It’s as unpleasant as it sounds. Especially hospital puréed food. Grim.
The problem is, we cannot continually blame the system for this lack of help available for these voiceless suffering souls. There needs to be an answer. I don’t think it is a case of simply providing more staff, greater understanding is needed in all areas of treating patients, and help is needed from higher up. There needs to be a change in the system. However, if these people can’t speak, how an earth is anything going to ever change?
Thank you for posting this. I have had awful experiences in hospital where doctors, nurses and physiotherapists (who were the worst) gave me very poor treatment because they didn’t understand how ill I was. Thank fully I did have a voice, but due to extreme exhaustion and pain I probably didn’t always make much sense. I think you are so right to highlight what it must be like for people who have no means of communicating. Such a frightening thought. Patients are incredibly vulnerable unless they have an advocate with them. Some people don’t even have family or friends who can visit and act on their behalf.
I understand that the NHS is in crisis, and staff are under a huge amount of pressure. However, it doesn’t take any more time to act with kindness and consideration towards a patient. My observation was that some of the staff weren’t suited to a caring role and should be doing a different kind of employment. What is most concerning is when the senior staff members don’t have the necessary empathy and inter personal skills, because they are the ones who should be setting an example for the more junior members of the team. Personally I think all medical staff should have to take mindfulness classes specially adapted to their roles. It might help with their stress levels too.
By people like yourself sharing your experience. I don’t expect people to fully understand unless they’ve been there but if just for a short time during their training staff were asked to be on the other side and feel the frustration of having that drink put out of reach etc they may think twice when they’re confronted with a patient unable to communicate.
I won’t pretend my experience of hospital stays have been good. I hope yours is ok, Karen. One thing I did, not convinced it had an impact, was I used documents online that explained my condition and reactions so they had it in writing on my file. I’m not convinced they read it but it’s got to be worth trying. Maybe having another copy close to you too might help? I wish you luck x
I’m glad that you posted this. I’m due in for surgery in a month or so and I’m worried about how difficult it is going to be to get help with my extra needs as a disabled patient. My last hospital stay 10 years ago was traumatic because staff let me down and made things more difficult for me, refusing to believe I needed the extra help I was asking for. It’s praying on my mind and I’m not sure how to help them this time around when my needs will be even greater.