Many people know me through my writing and teaching, but another hat I have worn for several years is that of a consumer health representative and as we deal with COVID-19, I’ve attended several excellent ZOOM meetings organised by Victoria’s Health Issues Centre (these are recorded and worth watching). 

Various health organisations continue to work towards improving how health is delivered whether the topic is related to COVID-19 or not. I also presented (via an online platform) to a conference at Melbourne University, organised by medical students for their 2020 MD Student Conference (MDSC). (Details below)

I’ve taken surveys for Swinburne University, where I volunteered for research, the Breast Cancer Network, and given feedback to the Cancer Council of Victoria. Sharing my experience with breast cancer and any health information, I discover, is often a motivation for writing.

Health Literacy Must Be A Priority

Health literacy is about how people understand information about health and health care, and how they apply that information to their lives. It is about how they use that information to decide on treatment and lifestyle.

Over the years, I have been able to use my writing skills combined with personal experience of the health system to give input and feedback to help health professionals and various institutions and government bodies improve the health information provided.

The Central Bayside Community Health Centre,  the Health Issues Centre and the Cancer Council welcome volunteers and are always willing to hear how they can improve health service delivery and patient outcomes.

From the Australian Commission on Safety & Quality in Healthcare:

• Individual health literacy is the skills, knowledge, motivation and capacity of a person to access, understand, appraise and apply information to make effective decisions about health and health care and take appropriate action.
• Health literacy environment is the infrastructure, policies, processes, materials, people and relationships that make up the health system and have an impact on the way that people access, understand, appraise and apply health-related information and services.

https://www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care/health-literacy

Volunteering To be  A Health Advocate May Help Others 

My health advocate journey began in 2009 when I attended a focus group at Central Bayside to help them rewrite leaflets about Diabetes.

My father had been diabetic for many years (mature-age onset) and moved from tablets to insulin before his death. From firsthand observations, I knew there was room for improvement in the brochures publicly available.

At the time, I was enrolled in the Masters of Writing so my writing skill was, and still is,  useful to share.

Pandemic Restrictions Resume in Victoria

It is worrying that COVID-19 cases have spiked in Victoria causing a Lockdown of several suburbs.

For me, the upsurge is not surprising because when the initial Lockdown was eased mid June many people behaved as if the pandemic was over despite Premier Daniel Andrews saying repeatedly, ‘just because you can doesn’t mean you should’ and the Chief Medical Officer, Professor Brett Sutton reminding us continually, ‘this coronavirus is ten times more infectious than flu.’

Few, if any, of us enjoy forced isolation, but most people DID put the health of others before social considerations and obeyed the rules. Let’s hope we can do it again!

• The message of the dangers of COVID-19 has made headlines since March – not just here but overseas. Any other topic has great difficulty gaining oxygen. Most people can access the Internet – there is no excuse for being ill-informed.
• In the beginning, there were mixed messages, especially from the Federal Government, but by April all States had the same mantra about social distancing and washing hands. Debate continues about wearing masks, but many people have made that choice and it helps reinforce social distancing.
• There is concern not enough effort was used in Victoria to ensure the message was inclusive of multi-cultural communities but frankly considering every country is touched by COVID-19 and we have multi-cultural television and radio stations with many communities having their own language newspapers, I don’t think that can be the only reason. There is also an excellent website with health translations in more than 100 languages. More likely it is the socio-economic make-up of those suburbs with people working the casual and low paid jobs of hospitality, retail and transport that have continued throughout the Lockdown period – plus the pressure on schools throughout Australia to reopen. The virus is highly infectious – it was never about elimination (a vaccine is a long way off and will ever only be 70% effective anyway) but aiming for suppression and control.
• Debate still rages about schools going back too early and the opening up of businesses and venues but considering the world is coping with an unprecedented crisis this century our various levels of government are doing their best – it was always going to be a balance between health and economic survival. Again – personal behaviour is the key.
• Sadly, some people CHOOSE to believe the seriousness of the pandemic and ignore regulations.

It is up to individuals to be aware, follow the rules, and take care.

Recording The Pandemic For Future Generations

In April, my friend Matilda Butler who runs the womensmemoirs.com site in the USA with Kendra Bonnett, asked women to write about COVID-19.

I submitted a reflective piece you can read on the site plus poems and stories from other women or read here as a pdf: article for Matilda

Now, with a sense of security rapidly diminishing if we continue to see larger numbers of infections, an update will be needed and it may well have a different tone!

There are writers all over the world recording this pandemic from a variety of perspectives and journalists and bloggers tapping daily. Next year and the years to follow, we’ll see a plethora of films, documentaries, plays, poems, novels and memoir…

When Lockdown began in April, I wrote a series of blogs with ideas for writing – good therapy to cope with isolation but also starting points to write your perspective on current events.

Here is a snapshot of one lot of research and there will be plenty more – only today, I completed a survey from the Breast Cancer Network.

I’m sure every community organisation and government department and local council is collecting data. The City of Kingston is – so have your say and contribute to the pool of knowledge about this time in history.

A summary of the results of the City of Kingston’s May 2020 survey:

From the 202 responses collected between 13-21 May 2020, they identified the following insights:

• A lot of people adapted to using technology to remain connected (89% of people)
• Around half were worried about being infected, but most (97%) had access to facts and information on quarantining
• 41% were worried that they or their families wouldn’t recover if infected
• Physical activity was cited as the main activity providing relief
• The main concern people had about being isolated was the loss of connection with their social support network

You can access the full report and also see regular updates from the website.

The Use of Technology Has Zoomed During COVID-19

As mentioned before, I have been extra careful since January because of a recent breast cancer operation and so adapted easily to Lockdown, isolation and social distancing.

When the Cancer Council asked me to contribute to the medical student conference at Melbourne University, I accepted because it could be prerecorded. The session recorded in May, but broadcast on June 25th.

The organisers and presenters plus the film crew amazing. It was a positive and fascinating experience. A great learning curve in the use of technology!

Here are screenshots from the session: “Breaking Bad News”.

This session forms part of the Day 4 program theme “The Ultimate Equaliser”. We have chosen this theme to give medical students the opportunity to have in-depth discussions on mortality and the human condition. We are very fortunate to have a number of esteemed healthcare professionals presenting on Day 4. An integral aspect of medical education is learning from patients, as they are often our best teachers. We feel that it is essential to include personal stories in a session on breaking difficult news, so that we can keep patients at the centre of our education.

I was one of three women who volunteered to share their stories on the day, and I read two pages from my story published in the book Journey – experiences with breast cancer.

Here is the selection – EXTRACT FOR MELB UNI MD CONFERENCE 2020. They also attached notes I had discussed with Georgia during the various phone calls and emails preparing for the session. NOTES – interview regarding cancer May 26th 2020.

My initial thank you to the organisers:

Thank you to the organisers for the opportunity to share my story. Thank you, too, for those who will listen who are joining the medical profession – as we have seen during this pandemic, the pressure, expectations, danger and sacrifices for frontline workers has revealed how important, precious and valuable you are for a healthy functioning society.

Personally, I’m grateful to medical science for my life. The improvements in breast cancer detection and research plus treatment available in Australia meant my cancer diagnosis in 2010 disrupted my quality of life but was not a death sentence.

And that is what the mention of cancer means to most people – a terminal illness that once you are diagnosed and even go into remission, it is a coiled snake waiting to strike. That metaphor turned out to be true for me because of my breast cancer, albeit another type, returned in December 2019.

In the words of my wonderful breast surgeon, Dr Peter Gregory – ‘nine years Mairi, you almost reached ten!’ His disappointment and disbelief matched mine because of course there are legendary milestones, whether true or not, of 5 years and 10 years – making those free of a recurrence is believed to extend the likelihood the cancer won’t return , or worst spread to other parts of the body.

Both times my cancer was picked up by breast screening and although at a recent event put on at Peter McCallum’s I discovered only a small amount of cancers are picked up by mammograms, I am so grateful to have access to this free program in Australia.

And my thank you after everything went as planned!

Dear Georgia,

To be cliched – the pleasure was all mine:)

Thank you again for giving me a platform for my story and I think you, Tansy and all the others have done an amazing job considering the circumstances in which you have had to operate.

Thank you for always being so courteous and ready to respond and adapt to my needs, even when it probably inconvenienced your own,

All of you can be immensely proud of what you are achieving but more importantly the place from where your efforts and the impetus has come – creating a first class health system that cares for everyone’s needs.

I was most impressed with – I think it was Lily who said it – ‘welcome, this is the way of the future…’ You and your co-workers are all very talented and I can see the benefits for a lot of digital expertise being applied in the future for conferences etc because who knows how long travel or large gatherings will be risky to organise. Also, what you have done over the last few weeks has been amazing in establishing a pathway for all sorts of voices to be included at conferences where usually only certain ones are invited.

I know the title consumer rep has been coined, especially by organisations fighting for equity in the two-tiered system we have (private V public health) and for a multitude of voices to be heard, but I personally never want to move away from the word patient when I am referred to treatment for my health because it implies being in the care of a doctor/medical clinician. Whereas consumer can so easily be applied to someone shopping or dining whose main interest is value for money rather than the esoteric outcomes of quality of life regarding health procedures! 

We are all individuals and our bodies can respond in various ways and so care provided must always be personal and often tailored to suit the individual – not mass consumption – what works or is accepted by one may be inappropriate or not work on another.

A bit like in the 90s when suddenly those receiving education became clients rather than pupils or students. 

Word choice matters because we all come with our own prejudices, perspectives and experiences but it would be nice if we could agree on a terminology that gets the balance and duty of care right – and in some areas of our society there has to be an authoritative balance some times.

I want to be empowered to have a say in the health system but I also want to acknowledge the expertise of the people looking after me and that their advice is coming from a place of knowledge and wanting to heal me and I am happy to accept they know more than me but I hope they are also prepared to listen and set aside some of their assumptions.

Good luck with all your other planning and remember to take some time out for relaxation and fun – you deserve it:)

All the best

Mairi

 

We have a good health system in Victoria and there are people working all the time to make it better.

The health system had to take stock and organise to cope with the pandemic and remain functioning. It could have so easily become overwhelmed like other countries – especially Italy, Brazil and the USA.

In Victoria, the effort to keep everyone informed and to meet everyone’s expectations has been excellent.

The initial postponement of elective surgeries to ensure there were enough hospital beds and equipment if needed has been lifted, but if people don’t heed the warnings who knows what strain will be put on available resources?

The message I received and took on board is ‘don’t forget your health check-ups’ . An important message to act on. 

I went for my regular skin cancer check and they discovered an invasive melanoma. Despite increased testing for COVID-19 the results of the biopsies came back quickly and an operation including skin graft is scheduled for next week.

But if the system becomes overwhelmed, others in the future may not be so lucky.  We must stop the COVID-19 infection rate increasing!

I started off the post with a leaflet explaining the logic and simple steps to avoid spreading viral infections. These work for flu as well, and one welcome side effect of the isolation rules is that fewer people are contracting flu this season!

Here are just a few of the public notices around Mordialloc I see every day advising people about COVID-19:

I’m sure these informative signs are replicated in every suburb – authorities can only do so much – members of the public must cooperate.

Being in the high risk age group with underlying health issues, I sincerely hope people will make the effort to be informed and obey the rules so we can suppress the rapid spread of this coronavirus.

Support all those frontline health workers, plus the workers in other occupations who have remained or returned to work and must cope with new rules and the compliance necessary to combat COVID-19.