Category: HCCWA Blog

International Mesh Awareness Day – 1st May

Posted on April 30, 2017

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

Posted on March 27, 2017

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

Posted on March 24, 2017

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

Be optimistic, a second opinion can save your life!

Posted on February 27, 2017

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’?

Posted on January 22, 2017

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 Health Consumers’ Council upcoming events including workshop sessions for both health service professionals and health consumers.

Main Image Source: WildRoot

My Health Record. Your Say.

Posted on January 12, 2017

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. 

Press Ganey – what’s it all about?

Posted on October 6, 2016

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.

World Hepatitis Day

Posted on July 28, 2016

Today (28th July) is World Hepatitis Day and an opportune time to highlight that breakthrough treatments are now available for the thousands of Western Australians living with hepatitis C. There was an interview on Radio National this morning with the Kirby Institute about improvements in hepatitis C treatments. Thanks to the advocacy work by Hepatitis Australia and negotiations by our federal government with the pharmaceutical industry, treatment is affordable and has more success and less side effects. As a nation we have the eradication of hepatitis C in our sights.

Hepatitis WA’s Executive Director, Frank Farmer said “New hepatitis C treatments which have a 95% cure rate, and can prevent liver cancer, liver cirrhosis and liver failure.”

Latest figures indicate that due to the cheaper and more effective treatments which have been available now for five months, a record number of Australians have already commenced treatment. More than 800 people in WA have accessed new hep C treatments, but it is estimated that 20,000 people are living with hepatitis C in the state. These people are missing out on treatment, either because they are unaware or have not spoken to their doctor.

“Ask your doctor about new hepatitis C treatments. Don’t miss out. You can be cured in as little as 12 weeks and with far fewer side-effects than previous treatments,” Mr Farmer said.

In terms of hepatitis B, it is estimated that there are 14,000 people living with hepatitis B in WA, but nearly one in two people don’t know they are living with hepatitis B and over 80 per cent are not receiving the care they need.

For more information about the new treatments, contact HepatitisWA on Metro (08) 9328 8538  Country 1800 800 070 or visit www.hepatitiswa.com.au

 

After cancer treatment ends – Where to from here?

Posted on July 11, 2016

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

This week I sat down with Sandy McKiernan, Cancer Information and Support Services Director at the new Cancer Council WA offices in Subiaco, to discuss the upcoming August Community Conversation in partnership with Health Consumers’ Council (WA) and Carers WA, ‘After cancer treatment ends – Where to from here?’.

Why are you holding the community conversation?

Cancer Council WA has a strong commitment to engaging with the community. My division and I provide a direct service to people affected by cancer; be that cancer patients, carers or their family and their children. We feel really strongly about having opportunities for meaningful conversations. That is why having Carers WA and Health Consumers’ Council WA involved in this meeting is really important.

It is not unusual that, when someone is diagnosed with cancer, their partner is also suffering from a chronic condition. This makes it all the more difficult to have support in the home during treatment. This is when our services can be invaluable by providing them and their family with support.

What services do Cancer Council WA offer?

Cancer Council 13 11 20 service is there to support consumers, carers and family members who are affected by cancer. Our metro team and our regional teams of registered nurses with oncology experience can provide information and support on cancer and cancer-related issues. If we don’t provide the service they need, then our team can connect consumers to other providers that do.

Cancer Council WA want to engage with consumers for which we provide a direct service. We enjoy the opportunity to speak to, assist and support consumers who are affected by cancer.

What are the key outcomes you would like to achieve by holding this meeting?

We want to identify the gaps; What difficulties have they experienced after treatment? How can we continue to support them? What challenges have they faced? Are our current services meeting their needs? Were or are they being well supported?

We value any opportunity to work with those with lived experience. To be able to gain feedback to improve our services, is priceless.

Who can attend this meeting?

The meeting is open for those who are still receiving treatment for cancer, their carers and family; and those who have ceased treatment, their carers and family. It is also important to remember that carers and family members have a lived experience with cancer too.

With the state elections coming up, the voice of the people has become all the more important. As strong advocates for good public policy in cancer, we want to find out what is the voice of the people. We know there are system issues, but gaining a better understanding of the lived experience and what consumers believe could help changee things, is important.

Is there anything more you would like to add?

It would be fantastic if we could attract future consumer representatives that would be willing to talk about their experience in a more formal setting. There is strength in talking about cancer and, with an increase of consumer representatives, we can grow our interactions with other agencies, increase our network and continue to champion improvements to cancer treatment in the WA health system.

We hope people are willing to share and use this opportunity so that we can discover what is important to them.

Have you been affected by Cancer?

Cancer Council WA, in partnership with Health Consumers’ Council (WA) and Carers WA, invites those who have been affected by cancer, their family and carers to share their real life challenges regarding life after cancer at a Free Community Conversation on 24th August, on living well after cancer treatment. Click here for further details.

ccwa logo