As the original idea in setting up this account was to document my journey through having a hysterectomy almost 5 years ago, I thought it was time to tie my current journey back to my previous one. The journey that lead to that surgery and the aftermath was long and difficult and completely life changing. I learnt a lot about myself, how other people view chronic pain and chronic health conditions and a lot about the medical systems of two different countries. A lot of those lessons were hard ones, and involved some very unpleasant realities.
One of those hard realities is that although there are some very compassionate and committed people who work in health care, ultimately, the medical system does not see you as an individual. There is only one person in that system who is looking out for you. That’s you.
I’m not saying that I’ve been alone in this. My friends and family, and especially my boyfriend, have all been brilliant. But when you’re sitting in that consultant’s office or lying in that hospital bed or being subjected to yet another invasive procedure, the system only sees you as a number. All you have to do is look at the way government talks about the NHS in the media. It’s all about numbers.
Not a lot of people in the medical system will ever really get to know you. In six months of dealing with a consultant, it is quite likely that he or she will have only actually spoken to you for a total of about 20 minutes. They might be the expert in their chosen field, but you are the expert on you.
What this means is that you have to stand up for yourself. Question what is being proposed. (Why do you think this is the best choice? What are the benefits and risks of going this route? What do you hope to achieve for me by doing this? Is this right for me?) Make sure you fully understand everything before agreeing to something. You are the one that lives in your body, not them, so you'll have to live with the consequences of any decision. Remember that there are only very specific circumstances where you can be forced into something against your wishes (ie, being unconscious, being detained under the Mental Health Act). You can withdraw consent at any time. Speak up. Demand a high quality service. Take a friend with you to appointments if you want the moral support. Don’t be afraid to piss people off. And don’t be afraid to make formal complaints when necessary.
And remember that ultimately, you and your health care team need to make decisions together. They can’t do anything without you.
One of those hard realities is that although there are some very compassionate and committed people who work in health care, ultimately, the medical system does not see you as an individual. There is only one person in that system who is looking out for you. That’s you.
I’m not saying that I’ve been alone in this. My friends and family, and especially my boyfriend, have all been brilliant. But when you’re sitting in that consultant’s office or lying in that hospital bed or being subjected to yet another invasive procedure, the system only sees you as a number. All you have to do is look at the way government talks about the NHS in the media. It’s all about numbers.
Not a lot of people in the medical system will ever really get to know you. In six months of dealing with a consultant, it is quite likely that he or she will have only actually spoken to you for a total of about 20 minutes. They might be the expert in their chosen field, but you are the expert on you.
What this means is that you have to stand up for yourself. Question what is being proposed. (Why do you think this is the best choice? What are the benefits and risks of going this route? What do you hope to achieve for me by doing this? Is this right for me?) Make sure you fully understand everything before agreeing to something. You are the one that lives in your body, not them, so you'll have to live with the consequences of any decision. Remember that there are only very specific circumstances where you can be forced into something against your wishes (ie, being unconscious, being detained under the Mental Health Act). You can withdraw consent at any time. Speak up. Demand a high quality service. Take a friend with you to appointments if you want the moral support. Don’t be afraid to piss people off. And don’t be afraid to make formal complaints when necessary.
And remember that ultimately, you and your health care team need to make decisions together. They can’t do anything without you.
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