Seconds away… Round 2.

How many people did I manage to piss off royally with my previous post! Wow! Many apparently.

So, I have received emails from a good number of people complaining about my attitude towards ‘key’ workers. Namely, assistant district nurses, assistant pharmacists and childish doctor’s receptionists.

Now, ask me if I give a right royal fuck whether I have offended anyone at all?

If you correctly guessed my answer is ‘Seriously? I couldn’t give a flying fuck for any one taking offence at my personal opinion of the people I have to deal with. Your sensibilities are yours to look after. I have enough to do.’ Then have a gold star and go to the top of the class.

I refuse to apologise for people being offended by me about what I have to say. I think I was pretty much on it in my post yesterday, it was crystal clear to me at least, why I was so fucked off with this particular set of workers. What I will say is this, there is no room for stupidity, ignorance or arrogance when people work in the medical field, in whatever role they play. They are dealing with people’s health and wellbeing. The onus is on those workers to do their jobs properly, it is what they signed up to do after all, so that the health and mental wellbeing of those vulnerable people they are dealing with, is not made worse by their lack of due diligence in their work.

So, don’t complain to me about my shitty attitude, I’ve earned it. I am owning it, and I will continue to own it for the foreseeable future. I’ve literally battled for 32 years fighting for my son to get him the help and care he needs to be able to live as normal a life as possible. In the last ten years or so, that help and care has all but disappeared down the pan along with common sense and logic. Everyone thinks they can cut costs on medication by using the cheaper version, on dressings by providing the cheaper ones, the logic being, you can have more that way.
I am here to tell you that is bollocks. I am currently managing a pressure sore that has developed because my son has little or no sensation from the waist down. If I follow the rule that the district nurse knows best, we will be dealing with this sore forever and I am not exaggerating.

So, I don’t follow their rules, I follow my own rules, carved out over that 32 years of caring. I sourced the best possible cream that will actually heal the sore inside of 8 weeks. I know it works, I’ve used it many times on many different sores. It’s expensive, but it works. My GP approves the repeat prescription. He sees the logic and agrees with me.

Is it more expensive than 6 to 10 months supply of dressings and de-sloughing materials, less capable creams and lotions? No. It’s a damn sight cheaper in the long run. So I strongly object when a trainee district nurse comes to my house and informs me yet again, that I should stop using the cream that works, because she has been given a much better one that we must try and it’s a lot cheaper. When I ask her what it is, she provides a sample tube. I open my medicine cupboard and point to the 10 or so tubes of her cream that have been duly tried and which have duly failed to do the job at hand. Now shoot me if you want, but the ONLY thing I’m interested in at any point is the best interests of my son’s health and hopefully a speedy return to good health. And, just in case you are in any doubt at all, it is me personally who cleans and dresses this and every other pressure sore my son has ever had since he turned 13. Because in the past, we have allowed District nurses to come in and take care of them and a whole host of shit has gone down that didn’t need to, on one occasion culminating in my son spending 17 weeks in an isolation unit in hospital when he was 13 years old. Since then, I do it myself.

Do I care if the nurses are upset at my refusal to use their ‘tried and tested methods’? No. Do I worry that they won’t be there to ‘help’ me in the future? No. Why? Because I don’t need them. They insist on inserting themselves into our lives, so out of respect for the few that do know what they’re about, I allow them in, I tell them categorically, they can come, observe proceedings, cast a critical eye over those proceedings and then they can leave. If that offends them, I don’t care. I am way past answering to them.

When people get their jobs right and do it properly, I praise them to the roof tops, I thank them profusely, and I have even, on a rare occasion, written an email to their boss singing their praises. Why? Because they didn’t add to the problems, they created workable solutions and were polite and professional, but more importantly they were efficient and showed competence in their abilities.

Now, I really don’t care if I sound like I’m a know all who is too big for her boots, as one person succinctly put it, I don’t care if you think I am rude and arrogant and out of order. I couldn’t give a shit if you think I am too anything quite frankly. You don’t live in my world, you don’t live my life and you don’t deal with the myriad of problems I deal with on a daily, minute by minute basis. Most of those problems are health based and need an immediate and cohesive action to prevent them from becoming major health issues.

As an added extra bonus, hands up in the crowd all those of you who are living with or live with someone or know someone who is living with epilepsy. Now, how many people have seen a loved one have a fit or a seizure for no other reason than because they were taking a generic brand of epilepsy medication instead of the named brand which works. Had that switch not been made, it’s pretty much a given that the fit or seizure would not have happened. So, switching to cheaper brands makes sick people sicker but at least they saved some fucking money. Whoopee!

I could go on and on and on… I believe I have already said enough to make my point.

Don’t tell me I’m rude, instead, you could just acknowledge that I have the right to my own opinion, broadcast on my own web page, about my own personal situation. No naming and shaming goes on, just a broad sweep of general weariness and frustration and unmitigated anger aimed at the particular group of people I have to deal with.

You could also acknowledge that I shouldn’t have to be the one who has no choice but to do their jobs for them because they continually prove they can’t do it properly themselves. In an ideal world every person who ever donned a medical uniform would be the absolute best at what they do. Sadly, that is so far away from the truth it’s frankly frightening.

I am not saying, nor have I ever even hinted that I view every single person who works in health care this way. I deal with a lot of fantastic, professional, forward thinking people who have made a huge difference to us. I thank them for always doing their job properly. I thank them for their due diligence. It makes my son’s life (and therefore my life) workable.

I hope this clears up any misconception that I might give a rats arse about people being offended by me.