Category: Blog

Patient Experience is the Human Experience…

PXW Community Conversation Snapshot!

On Thursday April 27, 100 people representing consumers/carers, not-for-profits and health professionals in WA worked together to improve the Patient Experience by exploring the question “What Matters To You?” about our health system.

The Health Consumers’ Council event was opened by the Director General of WA Health, Dr David Russell-Weisz who assured the audience they were in the right place “to make the patient experience better”, and this is the most important work we need to do together.

Pictured: Jason Wolf, President of the Beryl Institute

Our keynote speaker was Jason Wolf, President of the Beryl Institute and international patient experience expert. Jason flew all the way from the USA to address and inspire our community about what works and what’s next in the global patient experience movement. And inspire he did! Jason highlighted that ‘Patient Experience is the Human Experience’. He highlighted that Patient Experience is a movement – not a specific set of activities with an end date. A video of his powerful presentation will be posted as soon as it is available.

Following Jason’s presentation the whole room set to work at their tables, exploring the question “What matters to you?” and even though we responded from our different perspectives, the themes we identified were the same. We then explored what practical patient experience improvement priorities using the interactive platform, Group Map. We were able to see other’s priorities and ‘like’ them in real time. The priorities developed are noted in the preliminary report as outlined below.

Pictured: NMHS Disability Liaison Project

A special thank you to LotteryWest, our sponsor for this event, the members of the Steering Committee and our Table Champions for your valuable contribution. We would also like the thank the hospitals and health services who provided a poster on the Patient Improvement Priorities they are currently working on. Click here to read about the projects and initiatives that are making a difference in WA Health. Click here to find out how you can submit your patient experience initiative.

 

PXW Community Conversation Preliminary Report

Pictured: Page 1 of the Preliminary Report

Click here to download the Preliminary Report. The full report will be available in the coming weeks.

 

PXW Health Leadership Breakfast Snapshot!

Pictured: Dr Simon Towler & Jason Wolf President of the Beryl Institute

Our 2017 Patient Experience Community Event was designed with the end in mind – how we would feed back to health leaders about the patient experience improvement priorities identified at the Community Forum.

Health Consumers’ Council partnered with the Australasian College of Health Service Management to hold a Health Leadership Breakfast On Friday April 28, 2017. Jason Wolf, our keynote speaker and President of the Beryl Institute presented the patient experience priorities to a packed room of WA health leaders.

Jason co-presented with WA’s Dr Simon Towler who provided a moving and grounding testimonial of his own lived experience of the moment he stopped being the Chief Medical Officer and became a cancer patient. His presentation highlighted  the consumer perspective, both the negative and positive moments and highlighted the importance of keeping the patient at the centre.

A video of the Breakfast will be made available on our website in the coming weeks.

A special thank you goes out to HESTA, our sponsor for this event, and to the Australasian College of Health Service Managers, such wonderful and supportive partners in putting this event together.

 

Health Consumer Excellence Awards 2017

Pictured: Pip Brennan, Hon Alanna Clohesy MLC, Award Winner Caz Chisholm & Jason Wolf

The Health Consumers’ Council  and the Western Australian Department of Health are pleased to present the winners and finalists for the ‘Health Consumer Excellence Awards’ 2017!

The Awards were opened by the Hon Alanna Clohesy MLC Parliamentary Secretary to the Deputy Premier; Health; Mental Health, standing in for Roger Cook MLA, Deputy Premier.

These awards were created to honour the everyday heroes in health in WA, from the administrator to the clinician and to recognise health consumers that go out of their way to make a difference.

A special thank you to our sponsors LotteryWest and the Western Australia Department of Health and our judges; Cheryl Holland, HCC Chair; Richard Brightwell; Karen Bradley, Chief Nurse; Dr Bernadette Wright, Clinical Psychologist; And Yvonne Parnell, South Metropolitan Health Service Board Member.

Congratulations to our winners! …And the winners are…

Health Organisation Award – Moorditj Djena

Health Professional Award – Elaine (Ellie) Newman

Health Consumer Award – Carolyn (Caz) Chisholm
Health Consumer Award, Highly Commended – Petrina Lawrence

Rosemary Caithness Award – Carolyn (Caz) Chisholm
Rosemary Caithness Award, Highly Commended – Janice (Jan) Thair

Aboriginal/Torres Strait Islander Health Award – Aboriginal Health Liaison Service – Royal Perth Bentley Group
Aboriginal/Torres Strait Islander Health Award, Highly Commended Boodjari Yorgas Family Care Program – Armadale Health Service

Compassionate Care Award – Fatima Edward

Click here to read about the winners and finalists of the Awards.

Pip Brennan | Executive Director & Lucy Palermo | Marketing & Communications Coordinator

Cover Picture: Pip Brennan, HCC Executive Director; Jason Wolf, Beryl Institute President; And Steph Newell, HCC Consumer & Community Engagement Coordinator

International Mesh Awareness Day – 1st May

Monday 1st May is International Mesh Awareness Day, the start of Mesh Awareness month.  It highlights the complications suffered by women who have had mesh implants to treat stress urinary incontinence and pelvic organ prolapse.

You may have seen a recent episode on The Project which highlighted the little known reality that when a urogynecological mesh implant goes wrong, it can go badly wrong, with life-changing effects for the women affected.  It has taken the recent media activity on the topic for some women to recognise the symptoms in themselves. And despite what Waleed Ally stated in the final moments of the Project episode on the topic, complications can occur quite some time after implanting, and only partial removal options exist for women.

 

The use of mesh is now the subject of a federal Senate Inquiry, which is taking submissions until the 31st May 2017. The Inquiry’s title “Number of women in Australia who have had transvaginal mesh implants and related matters” highlights that we simply don’t know how many women have had these implants, and how many of them have suffered complications.

 

Health Issues Centre Victoria hosted a Facebook Page “Understanding pelvic mesh implants and impacts on women in Australia”. This page is part of a united response by health consumers councils across Australia to ensure women’s voices are at the heart of the Senate Inquiry Submission. It links to an anonymous survey where women and their families are able to provide feedback to inform the joint Submission. The page will be active until the Inquiry Submission deadline of 31st May 2017.

 

Pictured: Caz Chisholm holding both her awards

 

Here in WA, on Thursday 27th April, the Health Consumers’ Council announced our Health Consumer Excellence Awards. The winner of the Health Consumer Award, and the Rosemary Caithness Award to acknowledge outstanding service to health consumers was the same person – Caz Chisholm. Caz is one of the founders of the Australian Pelvic Mesh Support Group, a Facebook page which has grown from 39 members two years ago to just under 600 members in the last week, after the airing of the Project episode. She has spent significant time and energy raising awareness for women about the issue and providing essential peer support. She was also directly responsible for ensuring that the Senate Inquiry was successfully advocated for by Senator Hinch in the first place.

 

For women and families affected by pelvic mesh, we urge you to have your say to ensure the consumer voice is central to the Submission. Check the Having A Say section lower down on this page for the links to the different ways to provide your feedback.

 

Please also note that the health consumers councils across Australia have developed a Consumer Information Sheet which appears below and is also available as a PDF. Please contact us on info@hconc.org.au or 9221 3422 if you have any comments or concerns.

 

Consumer information

For women who have had, or are considering having surgery to treat stress urinary incontinence and pelvic organ prolapse

If you have been diagnosed with pelvic organ prolapse or stress urinary incontinence, the likelihood is that you will be offered surgery once non-surgical options such as physiotherapy have been exhausted.

 

Surgery for these two conditions are usually involves a mesh insertion or implant. It might be called tape or a sling. It is all the same from a consumer perspective and these products are collectively known as mesh. The Therapeutic Goods Advisory Website has an updated list of complications associated with surgery using mesh. https://www.tga.gov.au/alert/urogynaecological-surgical-mesh-complications

 

Mesh implants have been offered to women since the late 1990s. The procedure is considered to be only partially reversible, and some women have travelled to America at their own expense to have mesh removed.

 

Before you consent to any surgical procedure, it is important to ask all the questions you need so you understand what you are consenting to. The Choosing Wisely campaign has created these questions to help you get started. http://www.choosingwisely.org.au/resources/consumers/5-questions-to-ask-your-doctor

 

1.      Do I really need this test or procedure?

Tests may help you and your doctor or other healthcare provider determine the problem and the procedures that may help to treat it.

2.      What are the risks?

Will there be side effects? What are the chances of getting results that aren’t accurate? Could that lead to more testing or another procedure?

3.      Are there simpler, safer options?

Sometimes all you need to do is make lifestyle changes, such as eating healthier foods or exercising more. Another option to ask your doctor about is native tissue repair.

4.      What happens if I don’t do anything?

Ask if your condition might get worse — or better — if you don’t have the test or procedure right away.

Stress urinary incontinence is not a life-threatening condition so consider carefully before undergoing any surgery. Do not consider surgery until all non-surgical options have been exhausted.

5.      What are the costs?

Costs can be financial, emotional or a cost of your time. Where there is a cost to the community, is the cost reasonable or is there a cheaper alternative?

 

What help can I access?

  • There is a Facebook group called the Australian Pelvic Mesh Support Group which can connect you with women who have had these procedures.
  • Shine Lawyers is one of the firms that is currently undertaking class actions in relation to mesh
  • Take this information sheet to your trusted health provider to discuss your current or future options

 

Having A Say

 

Complications associated with use of Pelvic Mesh

These are listed on Australia’s Therapeutic Goods Administration (TGA) website as follows: https://www.tga.gov.au/alert/urogynaecological-surgical-mesh-complications

  • punctures or lacerations of vessels, nerves, structures or organs, including the bladder, urethra or bowel (these may require surgical repair)
  • transitory local irritation at the wound site
  • a ‘foreign body response’ (wound breakdown, extrusion, erosion, exposure, fistula formation and/or inflammation)
  • mesh extrusion, exposure, or erosion into the vagina or other structures or organs
  • as with all foreign bodies, mesh may potentiate an existing infection
  • over-correction (too much tension applied to the tape) may cause temporary or permanent lower urinary tract obstruction
  • acute and/or chronic pain
  • voiding dysfunction
  • pain during intercourse
  • neuromuscular problems including acute and/or chronic pain in the groin, thigh, leg, pelvic and/or abdominal area
  • recurrence of incontinence
  • bleeding including haemorrhage, or haematoma
  • seroma
  • urge incontinence
  • urinary frequency
  • urinary retention
  • adhesion formation
  • atypical vaginal discharge
  • exposed mesh may cause pain or discomfort to the patient’s partner during intercourse
  • mesh migration
  • allergic reaction
  • abscess
  • swelling around the wound site
  • recurrent prolapse
  • contracture
  • scarring
  • excessive contraction or shrinkage of the tissue surrounding the mesh
  • vaginal scarring, tightening and/or shortening
  • constipation/defecation dysfunction
  • granulation tissue formation.

 

Author: Pip Brennan, Executive Director of the Health Consumers’ Council. Consumer Member on the Australian Commission on Safety and Quality in Health Services Reference Committee.

Bright Future for ‘Let’s Talk Culture’ Series

The future of ‘Let’s Talk Culture’ seminar series looked bleak after the closure of the Transcultural Mental Health Service. With the closure WA looked set to lose the first-rate seminar series. However, Health Consumers’ Council (HCC) are pleased to announce we have won a contract to coordinate three ‘Let’s Talk Culture’ seminars over 12 months!

What is Let’s Talk Culture?

The ‘Let’s Talk Culture’ seminars played an integral role in educating service providers about working cross culturally, specifically in mental health. Mental health is perceived quite differently from one culture to another. For services to deliver effective treatment there are essential aspects which need to be understood.

Let’s Talk Culture Background

The ‘Let’s Talk Culture’ (LTC) seminar series aims to assist mental health professionals to work in a culturally responsive way with clients from ethnically diverse backgrounds. These seminars, held three times a year, “(were jointly organised by the WA Mental Health Commission, the Transcultural Mental Health Service at Royal Perth Hospital; and, the Cultural Diversity Unit of the Chronic Disease Prevention Directorate at the Department of Health). Commenced in 2009, the LTC series ended in 2016 with the aforementioned closure.

The series “developed a level of unprecedented popularity and following across Western Australia’s service providers, policy makers, researchers, consumers and carers who have a stake and/or interest in transcultural mental health issues.  All seminars were typically booked out to full seating capacity (~ 240).   Topics that have been covered range from Spirituality, Culture and Mental health, Men, Culture and Mental health to the most recent, Alcohol, Drugs, Culture and Mental Health. (Mental Health in Multicultural Australia (MHIMA)

MHIMA is funded by Mental Health Australia and appears to be in some jeopardy regarding future directions; unfortunately this seems to be a common problem with all things multicultural at present.

Future of Let’s Talk Culture

Taking on the ‘Let’s Talk Culture’ series is a great privilege and we hope the wonderful people involved in initiating and developing the series will continue to be involved. HCC will be working in partnership with the Mental Health Commission and the Cultural Diversity Unit of the Chronic Disease Prevention Directorate at the Department of Health. Keep an eye out for more details, which will be available in the coming months on HCC’s website and social media channels.

Louise Ford | Consumer and Community Engagement Manager

World Tuberculosis Day: Prevention Better Than Cure

World Tuberculosis Day

Today is World Tuberculosis (TB) Day, 2017 is the second year of the “Unite to End TB” campaign. The UN Sustainable Development Goals and the WHO End TB Strategy target is to end TB by 2030. Click here to read more about World Tuberculosis Day and how you can support the “Unite to End TB” and “Leave No One Behind” campaigns.

 

The following article, first published in Health Matters Magazine in 2016, written by Majok Wutchok, (a member of the Sudanese community in Perth) outlines how West Australian Tuberculosis Control Program could be improved from a consumer perspective.


Tuberculosis (TB) is considered the second most deadly disease after HIV/AIDS in developing countries. Every year there is a mass movement of Australian’s travelling overseas on holiday and returning home. A major concern is there isn’t proper health promotion and public health education to protect consumers when they and their relatives return from overseas. Due to the lack of public health education they and their family may not be aware they are coming home infected with a tropical or communicable disease.

 

I recommend the WA Health Department set up a consumer overseas travellers screening task force, to avoid a future catastrophic spread of disease across the state. There is also a need to engage with healthcare providers to empower those infected with Tuberculosis and other communicable diseases and to support and empower their community.

 

Western Australia Tuberculosis Control Program

The current program, ‘Western Australia Tuberculosis Control Program’ is administered by the North Metropolitan Area Health Service (NMAHS). However, the program only endeavours to screen and treat the disease once it has been acquired, it does nothing to educate those at risk on prevention methods. ‘Western Australia Tuberculosis Control Program’ detailed as follows:

 

‘The program manages Tuberculosis in Western Australia and offers a state-wide public health service that operates as a resource centre and clinic. Aspects of the service include:

 

  • Treatment of Active TB: Diagnosis, treatment and case management
  • Surveillance and prevention of TB
  • Active screening of high risk groups
  • Contact tracing
  • Diagnosis and treatment of latent TB infection (preventative therapy)
  • Tuberculin Skin Test (TST), also known as Mantoux testing and BCG vaccinations to selected populations. Training and accreditation can be provided for relevant health professionals.
  • Free Health Service: All services related to the diagnosis, treatment of TB and relevant medications are provided at no charge. (See “Fees and charges related to the diagnosis and management of tuberculosis and leprosy” (Operational Directive OD 0229/09))
  • TB Infection Control
  • Advice on pre-employment screening of Health Care Workers and Tertiary Students
  • Advice on Management of TB risk in health care settings
  • Assistance with contact tracing in health care settings
  • Hansen’s Disease (Leprosy): Outpatient clinic service and consultative advice
  • Consultation: Specialist advice from medical and nursing staff is readily available, including preventative advice, health service education and access to information programs.
  • Policy and Operational Directives: Develop, implement and review policy relevant to TB management and control
  • TB Notification and Enhanced Surveillance data base: Maintenance and reporting on TB epidemiology’

(http://www.health.wa.gov.au/acc/tb/)

 

Prevention is better than Cure

Even in 1918 the thinking regarding Tuberculosis, was ‘Prevention is better than a cure’ (Cobbett, L 1918, British Journal of Tuberculosis, vol. 12, no. 1, pp. 16-19). According to the World Health Organisation (WHO 2014), prevention strategies involve encouraging and conducting research. It has been suggested that integrated intervention programs with consumers and their communities involved can be very beneficial. As opposed to vertical programs which are considered limited, integrated programs are considered far more effective for prevention. However, integrated programs need established communication and consistent health education together with consumers’ participation across all aspects.

 

Engaging Consumers is the key

Regarding primary healthcare and consumers, the involvement of a population group from high-risk consumers is paramount. At the same time public health education and community health promotion are also considered important, and are associated with the continuous use of those preventive measures by the consumer’s communities.

 

In short it is important sustainable prevention measures are taken to educate those at risk, to prevent them catching Tuberculosis and other communicable diseases while travelling, rather than simply screening and treating the disease when it has already been contracted.

 

Majok Wutchok | Consumer Representative | ANUTR | MPH Student

(This article was first published as ‘Consumer Approach Vs Tuberculosis Control in WA’ in HCC Health Matters Magazine 2016 Issue 2)


If you would like assistance partnering with consumers in health, the HCC Consumer & Community Engagement Team can help!

Partnering With Consumers

HCC facilitates on-site workshops that assist health care staff to increase their understanding of effective partnering with consumers in the governance and operational structures of your organisation. Principles of consumer participation within the context of health service accreditation can also be a key component of this bespoke fee for service training. Training can be conducted specifically for board members, executive committee members, management and point of care delivery staff, or with a whole of organisation approach.

Safety And Quality Committees

We can provide new and existing consumer members with information on the elements of quality and why patient safety is a critical area of focus in health care. This fee for service training can be tailored to meet the needs of specific safety and quality committees.

Register Your Interest

Please complete the form here to register your interest in HCC’s workshops.

For Further Information

Please contact the Health Consumers Council Community and Consumer Engagement team on 9221 3422 or email:

Louise Ford: louise.ford@hconc.org.au

Steph Newell: stephanie.newell@hconc.org.au

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.