Month: August 2019

What should a safe space alternative to Emergency Departments look like?

If you experience a mental health issue, or support someone who does, would you like to help design a safe space alternative to Emergency Departments?

The State Government has committed to implementing a number of recommendations from the Sustainable Health Review, including the establishment of a Safe Haven Café, a place to go when medical attention is not required but people need a place to feel safe and have access to non-judgemental support.

The WA Mental Health Commission has funded the Consumers of Mental Health WA (CoMHWA) to gather a wide range of views to ensure the space meets the needs of consumers and family members/friends in a caring/support role. We welcome your input via the surveys

Individuals with a lived experience of mental health and or alcohol/other drug issues
Families, carers and support people
Service providers

To hear more about the Safe Haven Café at St Vincent’s https://vimeo.com/295478108

Privacy and responsible data sharing in the WA public sector – closing 1 November

WA is one of only two states in Australia not to have legislation covering the issues of privacy and data sharing in the public sector. To address that, the state Government is planning to introduce legislation covering data sharing and privacy in the public sector.

You can have your say on this important topic:

– A (free) public information session on 4 September at 5.30pm https://www.eventbrite.com.au/e/privacy-and-responsible-inf…
– A free consultation session on 2 October at the Rise in Maylands (run by HCC) – register your interest by email info@hconc.org.au
– an online survey – complete this by Friday 1 November https://www.wa.gov.au/…/privacy-and-responsible-information…

The HCC team were at a roundtable table discussion on these issues on 27 August hosted by the Consumer and Community Health Research Network team of the WA Health Translation Network.

Some themes emerged from the discussion including:

– recognition of the value of legislation that would enable the community to benefit from appropriate data sharing
– interest in an independent body, with community involvement, to oversee the legislation and how it’s implemented – including what happens with any data breaches
– public reporting on how the legislation is being implemented, including what, if any, breaches have occurred
– clear information about what consequences there are for individuals and organisations that breach the law
– recognition that not all data is the same – and that different circumstances may require different approaches

 

Reproductive Technology Council – EOI by Friday 20 September

The Minister for Health has approached the Health Consumers Council for two nominations for the Reproductive Technology Council (RTC) Member, and one for the RTC Deputy member position.

The Review of the Human Reproductive Act 1991 undertaken by Sonia Allen (published January 2019 and available on the WA Health website here) has recommended a new advisory body be established which includes the current membership of the Reproductive Technology Council but also a donor of gametes/ embryos, a recipient of assisted reproductive technology and a person born as a result of donor-conception.

We are therefore seeking consumer members who would like to be considered for the positions.

We would be grateful if you could complete the documentation in this form which meets the requirements of the application as provided by the Minister’s Office. If you have any questions contact info@hconc.org.au and put Reproductive Technology Council in the subject.

Rebecca’s Story

Throughout my twenties, I had heard story after story from some of my friends regarding the joys of growing older. Self-confidence. Self-assurance. Self-love. Caring less about the opinions of those who do not matter. Growing to appreciate those who do. I looked forward to entering my third decade.

Six weeks after my thirtieth birthday my world came crashing down.

Friday October 24, 2014 will be forever etched into my mind. It was a beautiful spring day. I happily woke up early with plans to go shopping with my best friend for her wedding dress. I did have an appointment scheduled with my GP later that day, but I decided I would cancel. I was convinced the MRI that I had two days before to investigate some odd seizure-like episodes would return with nothing out of the ordinary. I counted the minutes down until I could call to change my appointment.

However, the clinic receptionist called me before I could get to the phone. A courtesy call to ensure I was still coming in that afternoon, she said. As a former medical receptionist, I read between the lines. Something had been found.

I was diagnosed with a tennis ball sized Rosette Forming Glioneuroma of the Fourth Ventricle in the Cerebellum/Brain Stem area. The Radiologist who wrote the report had spoken to my doctor. An atypical appearing tumour – the like of which he had not seen before – had triggered his curiosity, leading to further investigation.

Understandably my neurosurgeon was frustrated that a Radiologist had taken the liberty to give his professional opinion without additional testing. Interestingly the biopsy taken during the resection confirmed the thoughts of the Radiologist.

Two weeks later I was admitted for a craniotomy that went for ten hours. The sheer size of the tumour, along with evidence of multiple bleeds within, had deemed surgery a priority. According to my parents I passed all tests with flying colours to the point my dad had
checked that the surgery had gone ahead.

Early the next morning, tragedy struck again. At six a.m I was rushed into emergency surgery as a result of a cardio-vascular accident (in simple terms, a stroke) in the same area. My family were alerted and asked to say their goodbyes. My life hung in the balance.

I was left completely paralysed, unable to speak, blind, and with vertigo so severe I could not move, look, or lay on the right for six months. My neurology team held little hope for my recovery. My parents were given information on having me admitted as a permanent
resident to a nursing home. On the delivery of the news that there were no expectations of recovery my mother dissolved into tears. My dad, a short placid man, yelled “YOU DON’T KNOW MY F***ING DAUGHTER” and stormed out of the meeting room taking my
inconsolable mum with him.

I spent approximately a month in ICU and was eventually moved to a Head Injury Rehabilitation Unit after my parents regularly refused to have me placed in a nursing home. Rehabilitation felt slow. Re-learning every single little thing again – from brushing my teeth to reading, to driving – was incredibly laborious.

Learning how to speak again was probably the most difficult. Not only did I have to learn to move my face and mouth correctly, pronunciation, intonation, and where to pause. When I am extremely fatigued, I begin to slur. I am often the last to hear it. My loved ones
know that is a sign I desperately need a nap.

I learned to how to write again after my support worker – a keen artist – and I had a chat about hand sewing. In my previous life, I was trained as a fashion designer. Sewing, knitting, crochet are some of my interests.

My rehabilitation continues to this day. Fatigue management is what myself and my Occupational Therapist are working on. Since the surgeries, I struggle with neurological fatigue. Chronic fatigue has been my constant companion for many years. Previously I was
able to manage it effectively, however, the combination of the two can keep me bedbound for weeks.

Therapy has been a fantastic addition to my rehabilitation especially as it deals with my grief. Losing every single little thing that made me, me has been the most traumatic of all. The moment my brain began to haemorrhage is the moment my life splintered into a million pieces. The future I had planned on was no longer attainable. Career – I was working in Oil and Gas construction – gone. Family – shattered. Relationship – destroyed. The emotional fallout on my loved ones is still evident now.

After the first MRI to check for regrowth, another blow fell. My neurosurgeon delivered the devastating news that the tumour was still present inside the Cerebellum. This time it was deemed inoperable. I remember thinking to myself this journey is a nightmare that will not
end. Two subsequent tumours have been located on the Brain Stem and also deemed inoperable.

Fortunately, the regular MRI’s have shown the tumours – Beryl, Meryl, and Cheryl – to have no evidence of regrowth. Due to the rare nature of the Rosette Forming Glioneuroma, there is no effective chemotherapy treatment available. My neurosurgeon is of the opinion
that radiation may not be effective and therefore better to not proceed in the unlikely event that the tumours mutate to Glioblastomas.

Thankfully after an incredible amount of hard work, practice, and tears, the physical deficits appear negligible. Those who have not known me before this journey have no idea that I have fought a horrendous battle. Nor do they realise that the war continues, and will forever continue.

I am currently studying to be a life coach. I speak to clinicians in the public health sector and share my story at neurological support groups around the State. I serve as Secretary on the Board of the Health Consumer Council (Western Australia).

It has been almost five years since my life irrevocably shattered into countless fragments. Much like the art and craft I enjoy so much, I am daily reconstructing those fragments into a masterpiece of my own creation. I will arise more formidable and more beautiful than I
was before.