A bunch of stuff happened last year whilst a bunch of
other stuff was happening, so there are a lot of things I would have liked to
write about, that I didn't quite get to write about. One of those things was about the problems
Mum had getting medical support through the public system, and what actions we
took to (successfully) negate these issues.
So because it's a common condition which comes in a range
of severities, it is often not prioritised by our health system. Mum had a prolapse for three years before she
could even get on the waiting list to be seen by a specialist. We were very lucky that her GP really pushed
to get her into hospital at any chance she got. The impact
this was having on Mum's life was quite major - she became to unwell to work,
and had difficulty walking even small distances. She was in constant pain. It's hard watching your very active,
workaholic Mum go through this, and even harder for her to live through it.
Finally she got a date for an initial surgery. This surgery appeared to have gone well, but
shortly following surgery, her prolapse recurred. She had an outpatients appointment with her
surgeon, and at that stage was told that basically they couldn't perform the
surgery required as she hadn't signed the right paperwork (they hadn't given it
to her). Not only that, but more surgery
wasn't planned 'at this stage' as 'sometimes these things just work themselves
out'.
Mum was devastated. She felt as though she had just been written off. Not only that, but she was back at square one
with no real answer on how to move
forward. She talked about writing to
various people, so I looked up contact details for these people (Mum doesn't
have a computer or internet). On
searching for this, I found out about our Health and Disability Advocacy service and with Mum's permission, got in touch. This service has representatives all over New
Zealand, and they will travel to see people that are not well enough to come
and see them. Their role is to ensure people
know about their rights regarding health and disability care, and to help you
lodge complaints if needed. With their
help, we wrote a letter of complaint to the hospital concerned regarding the
specialist concerned. The advocate we
dealt with was lovely (although I re-edited the letter for grammar), and helped Mum to feel as though she was important, and her
concerns valid.
Following this, we received a date for mediation at which we would sit down with our Advocate and the surgeon and talk through the issues that we had raised with the complaint. It turns out that we never even got to mediation - an appointment with Mum's surgeon magically appeared. We could have our Advocate come with us to the appointment, but Mum thought that might exacerbate things - so I went to ensure Mum said what she needed to without getting too upset, and that there were two people there to listen and understand what the next step was.
The squeaky wheel gets the grease. At this appointment we found out the reason for earlier issues was that they found on opening Mum up that things were worse than anticipated, and any useful surgery was far more invasive than what she'd signed on for. We asked all the questions we wanted, and the surgeon answered them. Mum would be having a more extreme surgery as soon as scheduling allowed.
I wasn't at the appointment when everything went wrong,
but following the new appointment both Mum and I decided there was no point in
going to mediation - her concerns had been heard, and there was a plan - this
was the outcome we wanted from mediation anyway. Not only that, but we came away from the
appointment really liking that surgeon.
I imagine that at the follow up where things went wrong there may have
been issues of communication on both sides, and this happens - everyone has bad
days. We also decided that I will go to
Mum's appointments with her, because two sets of ears and eyes are better than
one (and I am more bolshy and less scared of asking questions).
Mum had that surgery, and it was very invasive, and
recovery was long and painful.
Unfortunately, around Christmas she had another prolapse. We have been back to see the specialist, and
she is now waiting on a third surgery. I
arrived to this appointment late, and when I got there, surgery had been
decided on, and Mum was just doing paperwork.
When her specialist saw me he was really happy, told me what was
happening, and gave me some names of surgeons so I could look up the procedure Mum
was having online and watch it (which Mum and I did after the
appointment). He also learnt I was
pregnant, and was excited to hear I would be birthing at Waitakere - if things go wrong and I need a C Section - he will be my surgeon, and I'm kind of glad about that.
So even though we didn't go through the entire advocacy
process, what we did go through was of massive help. We now have a great relationship with Mum's
surgeon/specialist, and although her health isn't magically better, there is a
plan, and we have confidence that the health system is doing what it can to get
Mum as well as possible. I am grateful
to live in a country where we have free public healthcare. We can't expect this system to be perfect, or
super fast - but we can learn how to use it better, so we can help negotiate
better outcomes for ourselves and our loved ones. Advocacy services helped us to do this. I highly recommend it to anyone struggling to
feel heard.
* * * * * * *
What prompted me writing this was learning that government funding will be cut to one of our beneficiary advocacy services. I haven't personally used this service, but I have been on the unemployment benefit, and the sickness benefit before. Like our hospital systems, these systems are not easy to understand, or get the most out of without help or negotiation. I found out I was eligible for certain things through friends - not staff at WINZ. Had I known the advocacy service was around at the time, I would have used it.
At the end of last year, NZ had more people unemployed than at any time in the last 13 years. It seems ridiculous to me to get rid of a service at a time it is most needed. PLEASE think about these advocacy services and who they help. A country where our ill are supported to get back on their feet, and where our unemployed can eat, while getting the confidence and support to get back into work seems far better than one where people in unfortunate circumstances are left to rot. Education and support is key, and it currently appears we'll need a change in government to facilitate this. People like my Mum are important in building our country, and there are many of them struggling out there at the moment.
