When I am asked why we started chemo@home, I often talk
about how when my Dad was sick, some 20 odd years ago, that there was no “@home”
services but that I was lucky enough to work in a hospital where the nursing
staff taught me (the pharmacist) how to give the antibiotics my Dad needed, and
this allowed us to take him home over Christmas. This was to be his last Christmas with us and
I am forever grateful that he spent it with us, his family, at home, and not in
a hospital.
This is absolutely true.
There are however, two other reasons that I was led down this path. Today I’ll talk about one of these.
I've worked in a number of hospitals, both public and private, for
around 25 years. I loved everything
about working in a hospital. There is a comradery
amongst the staff, one which is built on working hard, doing a difficult job
under challenging circumstances, which is hard to find outside of a hospital
environment. I think, maybe, serving in the
military may provide a similar feeling.
The thing is though, as much as I loved working in a hospital,
I really dislike being a patient in a one.
I dislike the noise and chaos, I need calm. The last time I was in hospital, I was near
the “pan room”, damn that thing is noisy!
I dislike being told what to do and when. Why exactly does my heart rate and blood
pressure need to be taken at midnight, when I’m asleep? I dislike my sleep being interrupted. Did I mention
the pan room and being woken to do my heart rate and blood pressure? I dislike
hard beds. My bed at home is soooo comfortable, I’m literally in love with it. I
dislike feeling that I spend 23 hours and 30 minutes of the day waiting for someone to do something
that will help me to get better so I can go home. I FEEL like this as a patient, even though I
know what those hours and minutes are spent doing as a health professional. I dislike the food, and being fed at weirdly early
times. Only my nan and pop ate dinner at
5.30pm. I dislike that people come into my
room, unannounced, and then don't say who they are or what they are doing there. That
is just rude. It is also so common, that in the UK they have introduced a program
called “Hello, my name is” to educate health professionals on the importance of
introducing themselves. I don’t like
being apart from my family or my dog. Having
visitors in hospital feels awkward, as it’s hard for people to relax when you
couldn’t swing a cat in the room and there are no chairs to sit on. And try bringing in your dog, see what reaction that gets!
I’ve DAMA twice – that means I have “Discharged Against
Medical Advise”. TWICE. Once after my
son was born, and once after a minor medical procedure. The hospital staff are required to make you
sign a form to clear the hospital of any legal liability should something go
wrong because you left early. The thing
is, I made a conscious decision to leave, knowing the risks and benefits,
because I knew my body, because I was sensible, because I had numerous family
and friends who were health professionals to call on and I knew what to do IF
there were any problems. But I was
treated like a number, like I had no brain, no free will, and I was given no
choice.
For me there is no better reward for providing a service that enables people to have hospital level treatment @home, than reading some of the beautiful feed-back we receive from our patients and their families:
You have made this
horrendous journey a little less scary every time you visit our home. You
calm us, you support us and you explain so much that we find so confusing and
confronting. I can’t thank you enough. I only wish everywhere had
the same wonderful service that you provide. Thank you so much xxxx
Having my treatment for multiple sclerosis at home today was as easy as ever, especially grateful as it is so hot outside. Thank you xx
Our baby was able to
sleep in the comfort of his own room while I sat on the couch and my husband
held my hand as the chemo was being administered.
For me, having
chemo@home, it’s on my terms…that one choice of where you can have it, it’s
empowering.
It’s this that inspires me, my business partner Lorna, and
our whole chemo@home team. Letting people live
their lives as fully as possible during a difficult time. Giving them a sense of calm. Giving them a sense of control. Giving them CHOICE.
Having treatment at home isn’t available everywhere, it’s
not suitable for all treatments and it’s not for some people. But now that chemo@home is an option, it
should be a offered to those who, when appropriate, would choose it.
If this is you, and you want chemo@home to give your
treatment at home, ask for it. If you’re told no, ask why? Let us know what
the response is.
Julie
Julie
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