Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
I don't want this post to be misunderstood, so I'd like to start by stating my intent; I genuinely believe that anyone who chooses to work in a field where there are such extraordinary personal and emotional stakes does so because they are fundamentally good people who want to do the right thing. The majority of our journey has been characterised by the provision of exceptional care, empathy, thoughtfulness and professionalism by these people...some of it has not.
The sad thing is that it is the little things that are overlooked, not considered or ignored that often have the most devastating impact and, I suspect, often without the offender being aware of this impact. That is what this post is about and it is intended as a positive call to action. So please read it in that context.
Cutting to the chase, YOUR PROCESS IS RUINING MY LIFE!
Jake and I are just two people, we're not particularly exceptional for anything apart from what happened at 7:25am on the 26th October 2011. We don't have access to limitless resources or medical knowledge; we're just doing what we can in a truly shitty situation.
Thankfully we are optimists and so are both attempting to make the best of it. This is difficult to sustain though when each corner we turn seems to lead us to a big, ugly and unresponsive process.
When your world has shifted so fundamentally that you are having to re imagine every plan, expectation and dream, the thoughtless proclamations of 'that's the process', 'it's not our policy', 'we have to wait for A to talk to B, who needs to check with C who is on holiday for the next 2 weeks', 'that's not in the guidance' or (a personal favourite), 'that's not my job' are breathtakingly stupid and unhelpful.
Before you go all indignant and defensive on me, I know that these are the facts of your job and probably true in that context, but do you really have to say it that way? Could you choose to look around the process and see the broken person behind it? Could you take the time to really listen and then explain why the process is there, how it will benefit me and what you are going to do to make my experience of the process a bit less painful?
Take a moment to consider where the process came from, who did 'they' have in mind when they designed it? I'm guessing it was originally meant to help people like us, not defeat us. If not, why not?
So, a simple plea; next time you're about to take out your process and brandish in the face of someone who is potentially crumbling under the pressure and terror of their situation, please think about why you do what you do, the way you are about to communicate and the impact you're about to have.
Thank you from me and my Jake for reading; we'll keep trying if you will.
Written by
Dorsetcharlie
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6 Replies
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Dorsetcharlie, How right your words are!
Always remember (as I'm sure you do) all the systems and procedures have been put in place by people who were like me and your Jake pre our injuries.(The "systems" may think they know, but like those who haven't sustained an injury,they don't unfortunately)
The following is what we have had to do:- We have researched and gained lots of knowledge about my illness and are now never afraid to use our knowledge to confront all questions and decisions made by the decision/policy in place.
When we attend meetings, appointments and even family get togethers we take along our collated information and where relevant pass on what we have learnt. Often our family and the professionals our quite amazed about what we know (as we are! but Has the saying goes " Knowledge is power") Also (if you haven't already) ask for a copy of every letter/decision medical or not that is made about you by the " professionals".(it's your right under the data protection act to have all information, although sometimes there is a small charge. In some instances we have had to go back years, and request copies of letters with information on detailing injures, medical intervention etc... Which often have helped change the decisions previously made by the system, procedure in place.
We brain injury survivors, careers and family's need to be given information and help about what to do when faced with the "professionals" making life decisions.
If only we had known what to do from the start, because I/we truly believe our on going journey would and could have been much easier.
Once again, Dorset Charlie, your blog has made me think.. 'ah.. it isn't just me'. Two years on from my husbands head injury and I wish I knew now what I knew then. Keep strong and carry on doing as brilliantly as you are. Let me know if you find a magic wand that will wake us up from this nightmare and transform us back to the day before this different life began. Best wishes x
I like you was frustrated with my situation. This was the first time in my life that I could not go out into the world and earn my own money and stand up and defend myself and speak up for myself, I felt powerless.
My Brain Injury social worker came round for a visit, so I asked if she could take me down to social security dept. to help sort out my benefits and establish what I was entitled to? She agreed and set up a meeting for the following week. It was a horrendous morning the place was busy and confusing, we eventually sat at a desk opposite a 'professional' representative who did her best to deflect my social workers questions, my frustrations were building up inside, I felt the background of the noisy environment become fuzzy and distant then the face of the official was just fixed on me her lips were moving but I could not understand what she was saying, I looked down, I was dribbling onto the desk below, I was going into a seizure, this is the last I remember.
However, this confrontation did get my benefits established, after 3 months of sitting around waiting and worrying and being fobbed off with people not fully understanding - I think what upset me the most was seeing Janice my Brain Injury Social Worker who is such a hard working and understanding lady who also works for the local government trying to communicate with another female of a similar age who also works for the local government (a trained robot) - but not communicating in the same language -
There is a lot more to be said in the area of local governments and communication between professionals that applies worldwide.
Like LeslieDilks says all those procedures are put in place by people without a freakin clue!
whereas if they had people like my' brain injury social worker' involved on the other side, procedures might be a little different and 'we' the survivors might benefit some change.
Good morning Mrs K. Another wonderful blog from you, thank you.
And how I can once more empathise with you aaaggh !!! The one statement that always gets to me is "........... people like him....." What do the professionals mean by this statement? and how disrespectful are/were they being? My son has a brain injury, that's all. Yes, he's in a wheelchair, with a multitude of areas that need working on in an attempt to get them kick started, but HE'S STILL A PERSON!!!
It is frustrating when you can see where you need to be , but cant get there directly. Thats how i explain the madness. You can see the place , its across the way but the man who decided to make the place interesting made the roads undulating and meandering. The highs are hard going to reach, when you are in the low you lose sight of the place you need to be, just when you think you are close the road turns away in another direction again.
It sometimes takes forever to get someone to listen then another infinate time to allow them to process and action things, then another millenia for a reply or for the waiting approxiamate time to see the 'specialist' person.
What can you say to those who say such things? ...You could maybe try stating idea from communication theory "The meaning of a communication is the response it gets"...pause for their response, and then tell them how they have just made you feel.
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