Category: Blog

How you can help support quality healthcare for all

For some time, I have been thinking about people across the globe that access healthcare (health consumers). Unfortunately, most are not able to access the same quality of healthcare available in Australia. I wondered how we in the ‘Lucky Country’ could share our good fortune with others and help support quality healthcare for all.

 

Help support quality healthcare for all

To help support quality healthcare for all health consumers, Health Consumers’ Council will nominate each year a selected healthcare charity organisation located in Australia and overseas. We will provide those who attend our functions the opportunity to donate a gold coin go towards the nominated ‘good cause’. We hope you will support us in this endeavour to help improve healthcare for those less fortunate than ourselves.

 

Hamlin Fistula Ethiopia

In 2017 we are collecting donations for ‘Hamlin Fistula Ethiopia’. ‘Hamlin Fistula Ethiopia’ was founded in 1974 by husband and wife, Dr Reg Hamlin OBE and Dr Catherine Hamlin AC. I first came across the ‘Hamlin Fistula Ethiopia’ in the 1990s and have since read more about it, including in the book, ‘The Hospital by the River’, by Dr Catherine Hamlin. (Pictured: Catherine Hamlin Co-founder of Hamlin Fistula Ethiopia)

 

Catherine and her late husband Reg initially travelled to Ethiopia (as doctors) with the intent of staying for three years. Originally from Australia they dedicated their lives to the women of Ethiopia. Dr Catherine Hamlin turned 97 in January and she still lives in her home in the grounds of the Adis Ababa Fistula Hospital.

 

Catherine and Reg are part of my collection of heroes, people I admire for the contribution they have made to the lives of others and therefore the world. Today we constantly look at life through the media lens, making the world seem almost devoid of genuine acts of kindness. So, it is even more important to recognise genuine heroes like Catherine and Reg.

 

The Hamelin Clinic also has an office in New South Wales and I encourage you to visit their website here to learn more about this wonderful couple, their staff and women the Clinic heals.

 

Louise Ford | Consumer & Community Engagement Manager

Vote for your health this Saturday

Vote for your health this Saturday, make your vote count and read about the public health policies that will affect West Australians.

The wait is over, this Saturday March 11 you and others across WA will vote on the future of our State. The 2017 WA Public Health Pre-Election Forum was held on Tuesday February 14, providing an opportunity for the major political parties to present their public health policies. The following is a summary of what some of our politicians had to say about their party’s public health policies:

Vote for your health

Liberal Party of Western Australia – Health Policies

WA Health Minister John Day commented on the ‘fantastic’ health system that we as Western Australians enjoy while also mentioning that health is an ongoing concern where there is always more to be done.

  • Health Minister Day spoke about WA’s progress in decreasing tobacco consumption through the ‘Make Smoking History’ message. Health Minister Day indicated that, should he be re-elected, the Liberal Party would push to make it illegal for under 18’s to sell cigarettes and cigarette products, as well as banning the sale of cigarettes at large events and festivals.
  • Health Minister Day allocated a further 12 million dollars per year to grants in medical research. Moving forward Health Minister Day said that there needed to be greater emphasis on patient-centred research and that he was keen to make progress in this area.
  • Health Minister Day noted that at the end of last year, 70% of women in the third trimester of pregnancy had been vaccinated against whooping cough and should his government be re-elected they would aim to make changes to legislation to train midwives to administer the whooping cough vaccine with the aim of making that percentage even higher.
  • On the subject of Aboriginal Health, Health Minister Day said that his government was committed to working collaboratively with Aboriginal people and communities and they would ensure that healthcare remained culturally appropriate.

Click here to read more

 

Western Australian Labor Party – Health Policies

Roger Cook from the Western Australian Labor Party commented on Australia’s robust health system but fears for a public health system under duress. Mr. Cook suggested that ‘data from our patients and hospitals would guide the story and direction of healthcare for the future’.

If elected, Shadow Minister Cook outlined a range of policy initiatives from his government.

  • The development of Western Australia’s first ‘Medihotel’ – designed for discharged patients and offering specialist care while patients recuperate. Medihotels will essentially free up hospital beds, allowing patients to be seen and treated more efficiently.
  • In order to reduce the strain on emergency departments, a Labor government plans to introduce ‘Urgent Care Clinics’ whose purpose will be to service patients at an alternative setting where the appropriate care can be provided.
  • Promoting a message of ‘prevention is better than cure’, Roger Cook says, if elected, his government will focus on health promotion through active living as well as mental and social health. A ‘Let’s Prevent’ pilot program will be introduced to address the growing numbers of people diagnosed with diabetes.
  • A focus around changing the culture towards unhealthy lifestyles will be brought about through restricting alcohol advertising, including on Transperth as well as tightening tobacco laws if Labor is successful at the state election.

Click here to read more

 

The Greens Western Australia – Health Policies

Alison Xamon spoke on behalf of The Greens Western Australia stating ‘they will act as a strong and determined voice in the legislative parliament, particularly around the issue of mental health’.

  • If elected, The Greens have identified a need to focus on health in a holistic way by addressing systemic disadvantage and asking ‘how are people living?’ Understanding the social determinants of health and how they impact mental and physical health will be a key strategy of the Greens approach.
  • The Greens will focus on early intervention and the barriers to accessing services believing that once an individual is in acute care, they have ‘already been let down by the system’.
  • Alcohol and other drugs (AOD) are another key focus and Ms. Xamon indicated that The Greens would re-address the crisis by treating and understanding the problem as a health issue – not solely a legal issue. The Greens will stop the ramping up of this issue and recognise the impact it has on Aboriginal and disadvantaged communities.

Click here to read more

We hope this short and sweet health policy outline of the key political parties public health initiatives will give you the confidence to vote for your health this Saturday March 11, towards a stronger, innovative and well-resourced health system. Make your vote count.

 

Bronte Duncan | Advocacy Officer| Health Consumers’ Council (WA)

Be optimistic, a second opinion can save your life!

Going blind & mental illness

In 1993, I started having trouble seeing properly through my right eye. It was as if I was looking at the world through a spider’s web. An ophthalmologist diagnosed a condition which he called “collagen stringing”. He explained that all the ‘lines’ interfering with my sight were in fact strings of collagen cells which had formed inside my eye. He told me the condition couldn’t be treated and I would eventually go blind in that eye.

 

A year or two later, other symptoms started to appear. I began to forget things. My family, friends and staff picked up on changes in my personality. Like most people with an emerging mental health problem I was not aware that something was wrong and typically I refused to listen and seek medical help. The eye problem hadn’t got any worse and I had accepted it as normal. My family and I did not connect it with these new symptoms that were causing serious problems in my private and professional life.

A second opinion

In December 1999, an optician advised me to seek a second opinion ( another ophthalmic examination) and referred me to arguably the leading eye clinic in Perth. This time, the very senior ophthalmologist (who denied any knowledge of a condition called “collagen stringing”) took one look in my eye and sent me off for a CT scan. This happened on a Friday afternoon at 3.30pm and by 6.00pm that same day, I was in the consulting rooms of a neurosurgeon to discuss how to deal with a primary but fortunately benign brain tumour called a meningioma the CT scan had revealed behind my right eye.

 

The meningioma was wrapped around my right optic nerve which explained why I had been having vision issues in that eye for so long. The meningioma was as large as a squash ball and had pushed the right frontal lobe of my brain out of alignment inside my skull. As a result, I had been and was still living with a mental health condition called Frontal Lobe Dysfunction – the sinister source of all my personality issues and some very costly and unexplainable decisions I had made in my business which was by now heading south at an alarming rate.

A question of life or death

The neurosurgeon told me I had two choices – I could leave it in situ or have it taken out. He then told me that it would kill me within two years if I left it in – it was still life threatening despite being non-cancerous and not metastatic. What to do? Perform a craniotomy as quickly as possible.

 

From then on, things moved quickly. I was introduced to MRI machines and was admitted to hospital early the following week. Subsequent blood tests indicated I experienced a cardiac event during the craniotomy which took nine hours or so to perform so after a short spell in ICU, I was transferred to the CCU where I remained for two days. Presumably because there were no further symptoms of a heart problem. I was then transferred back to a surgical ward where I remained until discharge a week or so later.

Medication side effects

Among the post-discharge medications prescribed for me was one called Dexamethasone. It is a corticosteroid with potentially major side effects including elevated aggression, agitation, anxiety, irritability and pronounced mood swings. I experienced all of these to such an extent that I became an extremely unpleasant person to be around – so much so that my relationships with members of my family were strained to their limits. I did not know then whether my behaviour was due to the medication or the effects of head entry surgery which I believe can have much the same effect on behaviour and personality etc. as a serious acquired head injury. Either way, life was not good – so much so, I tracked down an organisation known then as the Head Injury Society and left a request on their voicemail for an urgent call back. Three weeks later, I got that call only to be told that the first appointment they could give me was in three months’ time!

 

There were some other subsequent issues relating to life insurance policies and our business which caused even more heart-ache than the dexamethasone but these are not relevant to a patient’s story from a health service provider’s perspective other than to say that serious injury or illness impacts on many more aspects of one’s quality of life than merely those which are typically considered in a health service care plan.

What could’ve helped my patient experience

Hindsight is a wonderful thing but my family’s and my experience of the continuum of care would have been better if the following could have occurred before and/or during the events in question.

 

  1. A campaign to educate the community about how to recognise the early symptoms of mental health problems for individuals and their families could have helped me to react more appropriately to the very genuine and now appreciated attempts by my family to convince me that I needed medical advice. Such a campaign these days could be incredibly effective given the knowledge distribution capability and reach of the internet.

 

  1. Had I sought a second opinion about a diagnosis of “collagen stringing”, the real cause of my sight impediment may have been discovered years earlier and the size and life impacts of the meningioma reduced accordingly. In those days, however, the thought that a clinician could be wrong just did not enter people’s minds and most people, including me, just went along with what they were told. Here again, a public education programme conducted by an appropriately trusted organisation would enhance public understanding of a consumer’s right to question a medical opinion and the wisdom of not placing blind trust in a health practitioner.

 

  1. At the time, bearing in mind that I was recovering from major surgery, no effort was made by the hospital to make sure that I fully understood why I was being sent to the CCU. Equally, no further tests were done so I was kept totally in the dark about my symptomology and progress if any. Likewise, I was given no opportunity to start coming to grips with the prospect of a future with a potentially serious heart condition.

 

  1. Three days after leaving the hospital, I went to see the latest James Bond film. Imagine my wife’s and my horror when, another two days later, the nurse removing the sutures from my head told us that I should not have gone as loud noises and bright lights could have caused me to have a fit thanks to the side effects of my head entry surgery and the dexamethasone. No such advice was given during my discharge from the hospital – all we did learn was that I was not allowed to drive a car for the following three months.

Today

My patient experience has a good ending. The removal of the meningioma restored the sight in my right eye immediately. A subsequent angiogram and stress ECG confirmed that I did not have a heart problem. My personal and business lives are now back on track and I have learned a lot – and met some fabulous people – by investing my time in the promotion of consumer involvement in how the health system should look as it faces the challenges of the future – particularly from a patient’s perspective!

Tony Addiscott | Health Consumers’ Council Deputy Chair


Register now for FREE Patient Experience Week Community Conversation | April 27

Tickets Are Limited! Register Now! April 27 – Community Conversation

Powerful Change Can Happen When There Is A Shared Vision Of What Works. Join The Health Consumers’ Council And The Australasian College Of Health Service Management As We Start A New Conversation About Patient Experience.

Expertise is found at both ends of the discussion between patient and healthcare provider. It is in administration, in hospitals and community settings. It is found in homes, with our carers and the community at large.

So join the conversation to create a shared vision, SHARE… What matters to me about the patient experience is… and ASK… What matters to you about the patient experience?

Can you see past the ‘Cultural Lens’?

The Cultural Lens

The term, ‘Cultural Lens’, can conjure up entertaining mental images, particularly when we realise that everyone has their own, deeply implanted, culture; so deep we aren’t even aware we have it most of the time.

 

I recently read the article “The cultural assumptions behind Western Medicine” (The Conversation, 2013) by Deborah Upton, it got me thinking again about the importance of recognising our own world views, perceptions, beliefs and values when we work cross culturally.

 

Culture is integral to all of us and given the cultural diversity of WA’s population, it is likely that we are going to work with people from different cultures to our own. Whether they be work colleagues, patients or clients. It is also likely that we will be challenged from time to time by cultural differences between ourselves and those who cross our path. Such challenges can be day to day things like food stuffs, to other, more significant matters like patient’s spiritual beliefs or thoughts around medical treatment.

 

When those challenges occur, it is important to realise that we all view the world, its people and cosmologies through our own cultural lens. Our beliefs and values etc. shape our world view and it is critical to remember at such times that there are many other ways of thinking, doing and being than our own. This does not make anyone wrong or right. It just means while working we need to remember to check our cultural lens from time to time and to view things in a cultural context.

 

Bananas and Snails

        

 

My own cultural lens tells me eating banana sandwiches is perfectly normal. I have eaten them since I was small, as has my family. On my first visit to Nigeria in 1994 I found my niece felt sick at mere sight of me eating a banana sandwich (as an aside, they have the best ever bananas in Nigeria!), even the very thought of a banana sandwich made her queasy…in Nigeria it is NOT ‘normal’ to eat banana sandwiches. It is ‘normal’ however to eat large snails; these are huge and I have held some that weigh at least 500g. They are cooked in stews and eaten with great relish. I have tried them and can’t say they are my favourite food, I suspect this is because I didn’t grow up eating giant African snails.

 

I have used this example to demonstrate how ‘normal’ varies from one culture to another; we cannot assume we share the same ‘normal’. Working cross culturally means this is an important factor to keep in mind and that we need to keep checking our cultural lens to see what is informing us.

 

 

Louise Ford | Consumer and Community Engagement Manager | Health Consumers’ Council


Do you want to find out more?

If you would like to know more about working and engaging cross culturally you can register for HCC’s workshops and Diversity Dialogue’s Forums. These can provide the foundation stones for you to build on, they are also great opportunities for networking and have received excellent feedback from past attendees. Nursing staff can also claim PD points for attending. Click here for information on upcoming workshop sessions and click here for information on up coming Forums.

Main Image Source: http://wildrootband.com/2015/01/life-through-a-different-lens/

My Health Record. Your Say.

my-health-record-sign-up

In May of 2015, Australia’s flagging electronic health record received a much-needed resuscitation by then Federal Health Minister Sussan Ley (let’s not go there!)

Since that time, the new Australian Digital Health Agency has been created, opening its doors on 1st July 2016. A new Chief Executive Officer, Tim Kelsey was appointed.

One of the key problems with the first version of Australia’s digital health record was the fact that we needed to opt-in, to take the decision to sign up for one. Overwhelmingly, we didn’t. In fact, only 10% of Australians ever did.

Since My Health Record’s rebirth, there has been a trial in Western Sydney and Northern Queensland for an opt-out trial. This means you need to make the decision to un-register. Overwhelmingly, people didn’t. 98% of people on the trial didn’t, while 2% of people did. Since that trial, the number of Australians with a My Health Record has increased from 10% to 18%. In people terms, currently 4.3 million Australians have a My Health Record.

And? So?

You may have experienced that disconnect between your GP or community health care provider and hospital. In part this is because hospitals are funded by our state governments while GPs and community care providers are funded federally. It makes for a massive data divide which we continue to bump up against. My Health Record is the missing link between the two systems and can provide a better integrated, safer health system. And you can always opt out if it is not something you want to be part of. AND you can also put notes into the My Health Record too. Sure, it’s early days, and I have had one for some time now with a bit of data but not a whole lot. Over time though, there is going to be a tipping point, and My Health Record will be populated with enough data to ensure it will become an invaluable tool for a more connected, safer health system.

What do you think? Fill in the survey…

On 3rd November 2016, the Australian Digital Health Agency launched their consultation. The consultation includes an online survey which closes on 31st January 2017.

Make sure you have your say!

Pip Brennan, Executive Director. 

Telehealth, valuable, affordable & life saving for patients

Australia’s first large-scale trial of telehealth monitoring chronically ill patients at home reduced mortality by 40% in Bacchus Marsh, Victoria.

It also reduced hospital admissions by 36%, length of stay in hospital by 42% and Medical Benefits Scheme expenditure by 24% through savings in cost of GP visits, specialist visits and procedures carried out.

In a 12 month long trial CSIRO researchers  provided 287 patients with a telehealth device that included participant/clinician video conferencing capabilities, messaging features and the delivery of clinical and study specific questionnaires, as well as vital signs devices to monitor their ECG, heart rate, spirometry, blood pressure, oxygen saturation, body weight and body temperature, with glucometry an optional add-on.

Patients reported improvements in anxiety, depression and quality of life, with many finding that home monitoring gave them a better understanding of their chronic conditions.

Jack Fernihough, a participant in the trial, attributed the telehealth technology to saving his life when it picked up the early signs his heart was under increased stress, allowing him to receive lifesaving surgery.

“In April this year I had a triple bypass and without the monitor we wouldn’t have known that there was anything seriously wrong,” Mr Fernihough said.

“It found out things about my heart that I wouldn’t have known about until it was too late and I’d probably be gone by now.”

CSIRO lead researcher Dr Rajiv Jayasena said the 12-month trial enabled chronic disease patients to self-manage their conditions at home through the provision of telehealth services.

“Aged patients with multiple chronic diseases, such as cardiovascular disease, diabetes or chronic lung disease account for more than 70 per cent of our health system expenditure,” Dr Jayasena said.

Health workers can assess changes in their patient’s conditions remotely and provide appropriate care interventions earlier to help them stay out of hospital.

Djerriwarrh Health Services’ Telehealth nurse, Lay Yean Woo, said was a very easy process to monitor her patient’s health results daily.

“I can see the information in real-time, I can monitor them, following up with a phone call if there’s any issues with their health,” Ms Yean Woo said.

“Also with the time that has been freed up I can look after more new clients being referred to me.”

Dr Javasena said more than 500,000 Australians aged over 65 would be good candidates for at-home telemonitoring.

Telehealth returned $5 for every dollar it cost. Applied over the country it would save the health budget more than $3 billion a year.

By Frank Smith – HCC Blog Contributor


Do you have a chronic condition and live in a remote region of Western Australia?

Click here to find out more about WA Telehealth services.

Do you live in a remote region of Western Australia and require health advocacy?

Health Consumers’ Council (WA) (HCC) Advocacy Service can help you navigate the health system and help you understand and support your healthcare rights. HCC can help you find and access health services and assist you in providing feedback about your health experience. This free service is available to anyone in WA. HCC has onsite Telehealth video conferencing equipment available to assist consumers in regional areas. Call (08) 9221 3422 or FREECALL 1800 620 780 to speak to an advocate.

Volunteering good for mental health

VOLUNTEERING in middle and older age is linked to good mental health and emotional wellbeing, according to a survey of 5000 British adults. Researchers Drs Faiza Tabassum, John Mohan and Peter Smith mined responses to the British Household Panel Survey (BHPS), which is conducted every two years on a representative sample of adults living in Britain.

The survey included a wide range of questions on how participants spend their leisure time and a battery of questions to measure mental wellbeing. Around one in five respondents (21 per cent) said they had volunteered. Women tended to volunteer more than men. Almost a quarter of those aged 60 to 74 said they volunteered, but only 17 per cent of the youngest age group. No association was seen between volunteering and mental health in people under 40.

The mental health scores were better (lower) among those who volunteered than among those who had never done so—10.7 vs 11.4—across the entire sample, irrespective of age. The average score was the best (lowest) among those who were frequent volunteers and worst (highest) among those who never volunteered. A positive association between volunteering and good mental health and emotional wellbeing became apparent at around the age of 40 and continued up into old age (80+). The researchers speculate that volunteering at younger ages may just be viewed as another obligation, while social roles and family connections in early middle age may spur people to become involved in community activities, such as in their child’s school.

The researchers were not able to gauge the extent of ‘informal’ volunteering, such as helping out neighbours, so couldn’t capture the full spectrum of voluntary activities. “Volunteering might provide those groups with greater opportunities for beneficial activities and social contacts, which in turn may have protective effects on health status. With the ageing of the population, it is imperative to develop effective health promotion for this last third of life, so that those living longer are healthier,” they write.

Previous research indicates that people who volunteer are likely to have more resources, a larger social network, and more power and prestige, all of which have knock-on effects on physical and mental health, they point out. “Volunteering may also provide a sense of purpose, because regular volunteering helps maintain social networks, which are especially important for older people who are often socially isolated,” they add.

Curtin University research professor Simone Pettigrew said the British results almost certainly also applied to Australia. “There have been some studies showing a relationship between volunteering and well-being among older Australians, mainly by Jeni Warburton from La Trobe University. Our (Curtin’s) random controlled trial that is close to finishing is aiming to test exactly this in WA by looking at both the physical and psychological predictors and consequences of volunteering among older people (60+ years). I’m hoping we’ll have some interesting results to share with you in due course,” she said.

By Frank Smith – HCC Blog Contributor

If you are interested in volunteering for Health Consumers’ Council (WA) call (08) 9221 3422 and ask for Lucy Palermo or email lucy.palermo@hconc.org.au

Press Ganey – what’s it all about?

You may have heard about Press Ganey, the patient experience survey being implemented in Perth hospitals including Royal Perth, Bentley, Fiona Stanley, Sir Charles Gairdner and Osborne Park Hospitals. The survey is sent out to patients two weeks after they have been discharged home and seeks feedback on a range of different measures. The question was asked about how this ensures a diverse response, e.g. from Aboriginal and non English speaking patients.

At our most recent Consumer Advisory Council Roundtable, we had their CEO, Amanda Byers provide a presentation on how their survey works. For those who were unable to attend, a video of the presentation is available below. It is just under 45 minutes long. The powerpoint is available here, however it is well worth watching the video as it makes sense of the slides’ information.

The third slide has a useful reflection on the suffering that a patient will undergo when in hospital. It notes that there is suffering unavoidably associated with both diagnosis and treatment. The avoidable suffering caused through defects and care in service is where the Press Ganey survey focuses. Press Ganey also highlighted that it was a validated tool which means it has had psychometric testing to ensure a reliable result.

Once the survey results are returned to Press Ganey they are analysed and the reports provided to the hospital. This process can see about a three to six month delay between the healthcare episode and when the feedback is provided to the healthcare service. Some hospitals such as Royal Perth are also implementing questionnaires that Community Advisory Council members undertake with patients to ensure a quicker response when issues are identified. The presentation did highlight however that service improvement can be supported through Press Ganey surveys using the example of a large hospital in Asia which transformed their health service in nine months. Despite this health service’s initial concerns about how well this would work, their performance improved significantly.

Women’s Health – Am I normal?

Lucy Palermo | Marketing & Communications Coordinator | Health Consumers’ Council (WA) Inc

This year during Women’s Health Week (September 5th to 9th) theme is ‘An I normal?’. Women’s Health Week is dedicated to all women across Australia, to focus on their health, learn more and take action. Every year Jean Hailes (Australian Women’s Health Organisation) holds a comprehensive survey of women’s fears and needs. They survey both consumers and clinicians. It is interesting to see the disconnect between what the consumers think and what the clinicians think (see summary below). This research highlights the importance of asking consumers about their health, their role in improving health care and service design.

The data collected includes; women’s top five health concerns, what women are keen to know more about, and what health professionals think women don’t understand. This year the findings have formed the basis of the theme, ‘Am I normal?’. Questions answered by the survey included:

  • “Why do almost a quarter of women consider weight management to be their biggest health concern – more than cancer (17%) and chronic pain (8%)?
  • Who do women most compare their bodies to?
  • Why do more than 65% of women not have regular sexual health checks?
  • Where does the survey reveal gaps between what women worry about and what health professionals think women worry most about?
  • How many women went on a crash diet in the last 12 months?
  • How often do women visit the doctor every year?”

 

The complete report can be found here.

 

The results of the survey found these were the top five health concerns for women.

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Compared to the top five health concerns as reported by health professionals.

3._Top_health_concerns_from_HPs_with_logos_600_292

 

Every woman at some stage has asked themselves ‘Am I normal?’. It is a perfectly acceptable thing to question whether our health is what it should be. But sometimes it is easier to say what is not normal, as everyone’s normal can be slightly different, which is still ok. If you do have any fears or questions regarding your health, don’t put it off. Go and see your GP and have your questions answered.

HCC Consumer and Community Engagement Program offers support, education and networking for health consumers as well as health providers who want to be part of making a better, more patient-centred health care system. We believe in the importance of authentic, productive partnerships in health care to create the health service we all aspire to have. Click here to find out more.