Category: Blog

The art of compassion in healthcare

By Dr Andrew Leech FRACGP MBBS BSc DCH

In 2019, Dr Andrew Leech was recognised for his commitment to patient-centred care as winner of the Health Consumer Excellence Award for Compassionate Care. Dr Leech is passionate about family health and the integral role of a GP, and believes GPs are in a unique position to offer support to patients. Here, he talks about the art of compassion in healthcare.

How do patients like to be understood and treated when they see a medical professional?

We are generally taught, as doctors, that taking a good history about symptoms, performing a physical examination, and offering evidence based, relevant treatment, makes a good doctor.

I now realise that medicine is a true blend of art amongst all the science. The balancing act between really understanding the patient as well as treating them is not an easy one. Medical schools are trying harder to teach this concept, but it comes with time, experience and feedback from your peers and from patients themselves.

The skill of understanding the person as a whole, and not just for their presenting complaint, probably takes a lifetime to master. We are complicated beings with many facets to what drives us. We depend on countless external and internal stimuli to function and thrive.

Despite all this, I have learnt that there are some beneficial skills that give patients hope, even when it may appear that all hope is lost. Active listening is a good start, but listening with empathy, understanding and compassion helps us to not only grasp the problem and build a therapeutic relationship, it helps guide treatment.

Patients definitely open up more when they are faced with some level of kindness. These may not seem like skills as much as a core human emotion that we all have the ability to possess. But the problem is we are busy, and amongst chaotic days filled with challenges it can be mentally fatiguing being a doctor, and therefore the emotional side of medicine can be stripped away.

I often feel we owe more than just our attention to patients. The Latin origin of the word doctor is ‘to teach’, and this rings true as we try to help educate our patients on the human body and why something might be changing for them. I think doctors can get caught up using quite funny language. We forget that this makes little sense. I am often caught out with this, only the other day the patient looked puzzled when I said they had a ‘carotid stenosis’. Part of the art of medicine is in the communication and wording of how we educate, therefore it may take different words to get a point across, diagrams, handouts, even seminars or workshops, online resources and social media.

Patients are becoming increasingly ‘educated’ in this era of information technology. I feel my role in this is to weave through the information and present the most logical, evidence-based solution. Adding compassion to this discussion means patients often feel ‘you get them’, or at least that you’re listening. We may not have all the answers, but if we walk this journey together then life might be just a little bit easier.

 

*This article was originally published in Health Matters 

Championing the patient experience

A Q&A with The Beryl Institute President and CEO Jason Wolf

Jason Wolf is a passionate champion and expert in patient experience improvement. As President and CEO of, Jason has led the growth of the organisation as the leading global community of practice and thought leader on improving the patient experience and establishing the framework for the emerging profession of patient experience.

In the lead up to Patient Experience Week 2020, Jason spoke to us about the importance of working to continually improve the patient experience.

 

How and why did Patient Experience Week come about?

The first Patient Experience Week was held in April 2014. The focused week was inspired by members of The Beryl Institute community to celebrate healthcare staff impacting patient experience. Taking pause during this week provides a focussed time for organisations to celebrate accomplishments, reenergise efforts and honour the people who impact patient experience every day. The first annual event also encompassed the former Patient Advocacy Week sponsored by the Society of Healthcare Consumer Advocacy (SHCA) after SHCA integrated with The Beryl Institute in January 2014.

What has the uptake of the movement been like around the globe?

PX Week has appeared around the globe in a number of ways, from the great celebrations championed right here in WA by the Health Consumers’ Council to efforts in the UK to recognise Experience of Care Week. While celebrations during Patient Experience Week are an underpinning of this movement globally, its observance serves as more of an acknowledgement of the work it takes to effectively champion and sustain experience efforts across healthcare settings globally. What may be more significant than just the celebration of Patient Experience Week is the acknowledgement of healthcare consumers themselves, as reported in our study Consumer Perspectives on Patient Experience (2018).1 This study included voices from Australia where 91% of consumers confirmed patient experience is extremely/very important to them overall and is significant to the healthcare decisions they make. This means that as we celebrate Patient Experience Week, every day provides an experience opportunity and comes with a clear expectation from those served by healthcare systems around the world.

In your view, what areas within health care have the biggest impact on patient experience?

I would suggest ALL areas of healthcare impact the experience people have. It is what led us to underline the importance of an integrated view of experience that acknowledges quality, safety, service, access, outcomes and more are all part of the experience one has in healthcare. It is not bounded by the walls of a clinical encounter.

When looking at healthcare through the eyes of the patient or family member, we see that experience is directly affected by quality, safety and service efforts, and influenced for some by cost and broader public (population) health issues that play a role in both clinical and organisational decision making. From an operational perspective, quality, safety, service, cost and outcomes may be distinct areas of work, but they are not usually seen as distinct by the individual in a patient bed or at the bedside, in a waiting room or in the surgery suite, in a residence or in the recreation room. Although organisations may build efforts to address and improve each of these areas, the consumer of care in most cases does not distinguish between a quality encounter, safety protocol or service intervention as separate experiences, nor does he or she view cost—or, for that matter, broader population health issues that influence decisions—as separate.

In a similar light, we introduced the Experience Framework2 last year to further reinforce the integrated nature of experience in healthcare today. The Experience Framework includes eight strategic lenses through which any experience endeavour should be framed. It reinforces the integrated nature of experience efforts and provides a means to identify where you are excelling or may have opportunities to address. It also offers a means by which knowledge, resources and solutions can be aligned.

The eight lenses and the rationale for why they are essential to the experience conversation are:

  • Culture & Leadership: The foundation of any successful experience effort is set on who an organisation is, its purpose and values, and how it is led.
  • Infrastructure & Governance: Effective experience efforts require both the right structures and processes by which to operate and communicate and the formal guidance in place to ensure sustained strategic focus.
  • Patient, Family & Community Engagement: Central to any experience effort are the voices of, contributions from, and partnerships with those receiving care and the community served.
  • Staff & Provider Engagement:  Caring for those delivering and supporting the delivery of care and reaffirming a connection to meaning and purpose is fundamental to the successful realization of a positive experience.
  • Environment & Hospitality: The space in which a healthcare experience is delivered, and the practices implemented to ensure a positive, comfortable and compassionate encounter must be part of every effort.
  • Innovation & Technology: As a focus on experience expands, it requires new ways of thinking and doing, and the technologies and tools to ensure efficiencies, expand capacities and extend boundaries of care.
  • Policy & Measurement: Experience is driven and influenced by external factors and systemic and financial realities and requires accepted and understood metrics to effectively measure outcomes and drive action.
  • Quality & Clinical Excellence: Experience encompasses all individual encounters and the expectations they have for safe, quality, reliable, and effective care focussed on positively impacting health and well-being.

Through the Experience Framework, we can create a more efficient connection of needs to knowledge, strategies to resources and opportunities to solutions, expanding the collective global dialogue through a common structure for focus and action. In having a means to align efforts at a macro level, we are well-served to drive specific efforts and address specific needs to the level required in any healthcare endeavour.

What key messages would you share with health service providers around patient experience?

I have written about this often and would suggest a few key points I offered both in our most recent research paper, The State of Patient Experience 2019, and in our 2018 study, To Care is Human. In The State of Patient Experience 2019, I wrote:

In moving to the future of healthcare grounded in experience, this calls on us to recognise and act on a few fundamentals, many that have been essential to our focus at the Institute and some we have discovered in our constant work to improve the patient experience and elevate the human experience in healthcare.

  1. Patient experience is not something healthcare does, it is who healthcare is. It is when experience is simply seen as a thing to do, a box to check in a complex healthcare world, that its possibility is immediately weakened. Experience happens regardless of plan or process. It is who a healthcare organisation is and how it is perceived by others. It is incumbent on all in healthcare to build organisations that realise that every action, every encounter and every interaction create an experience for all involved. The choice then becomes to consistently create moments that will ensure the experience is one we aspire to offer.
  2. Patient experience is driven by all we do and, therefore, every effort must be approached with an integrated view of how it will impact the overall experience we provide. This is the essence of the experience framework itself. It is in understanding that all the elements it includes, the eight strategic lenses, while often operated distinctly in healthcare, must be seen as one integrated set of actions in ensuring an aligned and effective effort to drive experience and therefore the outcomes we look to achieve.
  3. To succeed externally, we must focus internally. The ideas that culture matters or that how we treat those who work in an organisation will impact the experience of those it serves are not new, yet healthcare leaders have been slow to turn this understanding into action. It is not an accident that the data from 2015 to today reveal a rapidly growing awareness of communication and employee engagement as the primary path to experience success. In fact, as revealed in the 2018 study To Care is Human, healthcare units who achieved high performance in experience all attested that after getting communication with patients and families down, the next critical element was to ensure the engagement, teamwork and well-being of those working in healthcare.3 If organisations are not willing to work on themselves first, they will never ultimately achieve the experience success they seek.
  4. A commitment to experience will not (and must not) ever end. In hearing from many organisations over time since the first state of patient experience study in 2011, one of the greatest issues raised is that of sustaining success. This raises an opportunity for all organisations to consider. While many organisations initially related success to survey outcomes and percentile rank, they too seemed to feel that once they hit a certain level, they had achieved what they could. Many of those organisations assumed this achievement would continue; they shifted their focus or took their foot off the gas on their efforts. All of this led to diminished scores, questions about efforts, frustration and even more significant actions in changing staff or redesigning process. These organisations thought experience was something to be achieved. That presents a false consideration, as that idea means it is done, over, accomplished, but the need to ensure the best in experience never truly ends. It is about a relentless pursuit of excellence, about consistent delivery of intent and an unwavering commitment to the human experience at the heart of healthcare that will lead to the outcomes all aspire to realise.

How are patient experience and health outcomes related?

I would simply add here that if we see experience as the integration of quality, safety, service, access and outcomes, then experience is a measure of the outcomes achieved. If we help people get better through improved care, that outcome is their experience. If we help them to live the remainder of their life, whether days or decades, with dignity and respect, that is their experience, and an attempt to distinguish experience from that undermines all we aspire to in healthcare.

Yes, there is prevailing research that shows high experience scores (for instance, represented by survey scores in the US) leads to better quality outcomes4, but this research only looks at experience as measured by the scores and does not acknowledge all we addressed above. The reality is that when people are engaged in care, feel listened to, are communicated to in a way they can understand and are treated with dignity and respect – all primary identified needs of healthcare consumers1 – then we tend to see better outcomes. The discussion of experience undermining quality is a dangerous and misguided conversation that still relegates experience to satisfaction. We are not addressing how happy people are in tackling experience, but rather we are committing to their health, their well-being and their humanity and are committing to the best in outcomes for all we serve. Thus, experience is inextricably linked to outcomes. They are more than related; experience is the ultimate outcome of safe, quality, reliable and human care that all patients and families deserve.

What does the future look like when it comes to patient experience?

We are now in the midst of an inquiry on the future of human experience over the next decade as a call to action and an identified opportunity for healthcare organisations globally. I would encourage you to read and react to the dynamic and provocative path we offer, consider ways in which you can engage, where you can add practice or evolve systems and processes and how each of us can contribute to the future of human experience we all aspire to see and know all in our care deserve.

The Future of Human Experience 2030 will be available from the Beryl Institute in late April.

 

 

References

  1. Consumer Perspectives on Patient Experience 2018 (https://www.theberylinstitute.org/page/PXCONSUMERSTUDY)
  2. Experience Framework: https://www.theberylinstitute.org/page/ExperienceFramework
  3. To Care is Human: The Factors Influencing Human Experience in Healthcare Today (https://www.theberylinstitute.org/page/ToCareIsHuman)
  4. How U.S. Health Care Got Safer by Focusing on the Patient Experience. (https://hbr.org/2017/05/how-u-s-health-care-got-safer-by-focusing-on-the-patient-experience)

*This article was originally published in Health Matters 

Digital Health – where are we at?

By Pip Brennan, Health Consumers’ Council Executive Director

My Health Record

Since January 2019 when the opt-out period ended, 90% of Australians have ended up with a My Health Record. Like all our state counterparts, we were funded by the Australian Digital Health Agency to circulate information materials on My Health Record via our networks. We have noted that some social media posts have attracted concerns from consumers, and have communicated these to the Australian Digital Health Agency.

We also undertook a survey to explore the issues important to consumers, and gain an understanding of real-life experiences of using My Health Record. We are currently compiling the results of this survey, and you will be able to find them on our My Health Record web page soon.

On 11 December the CEO of the Australian Digital Health Agency, Tim Kelsey, announced his resignation. A new appointment will be made early next year.

WA’s new Digital Health Strategy

As noted elsewhere in this edition, this strategy was released in October 2019, almost a year to the day of the last stakeholder engagement HCC was able to be part of. Now the Strategy has been released, it’s clear that the main goals require an electronic medical record. The scale of this undertaking is not to be under-estimated. The WA Health Information and Communication Technology Consumer Reference Group re-convened in November 2019 and there are hopes for more robust engagement and a co-design process with consumers, clinicians and administrators to drive this project forward in the way it needs to go.

Data and Privacy

Meanwhile, WA’s Department of Premier and Cabinet has completed the Privacy and Responsible Data Sharing consultation, and submissions received are now being analysed and legislation drafted. It may surprise you to know that we are the only state without privacy legislation.

I contributed to an independent submission which was supported by Professor David Watts, former Victorian Privacy Commissioner, and Dr Bridget Bainbridge, whose inputs were kindly supported by the Minderoo.

The submission argued for an innovative approach to the drafting, rather than merely “cutting and pasting” other state’s legislation, first written in the 1980s. Our world has changed beyond recognition since then, and Europe has led the way in developing the General Data Protection Regulations which seek to uphold civil rights. Th argument was made to aim for something along these lines that will allow us to more easily participate in international research.

Data is the new oil

It has often been noted that three enormous enterprises, Amazon, Google and Facebook, do not charge for their products. That is because the data they harvest from their platforms is far more valuable and marketable than membership fees. It is vital that as citizens we do not “give away the farm” when it comes to our health data. There have been alarming precedents in other countries where health data has been swapped for “innovation” – so that the costs of developing a platform, for example, are not met by the public purse. But what is the cost of this in terms of loss of privacy, in leaving ourselves open to having our data re-packaged and sold back to us?

Meanwhile, there is a confusion in the public mind about how much data is shared between government agencies. There is an expectation that data is shared much more than it really is. The excuse of “privacy” is often invoked by government agencies keen to control what information is shared and avoid contentious issues reaching the light of day, or stymie the ability of people to seek redress.

While in WA it was noted that our lack of privacy legislation is hampering data sharing, in all other jurisdictions where privacy legislation exists, it is invoked as a reason not to share data. As always, culture is a key driver of how policy and legislation is enacted.

In Australia there is no independent, publicly funded app for My Health Record. There are three commercial providers who provide apps, and as we saw in 2019 with the Health Engine debacle, in some states our data was being on-sold to third parties – which consumers had consented to with one click, without any real understanding of what we were consenting to. The phenomenon of signing away our rights is endemic. The Norway Consumer Council worked out that it would be quicker and faster to read the New Testament than it would be to wade through the terms and conditions of 33 apps on your average smart phone.

What to do?

As always, a “buyer beware” approach is important. If something is free (Facebook for example), then you’re for sale. Many of us make this call because what we receive is worth the (largely invisible) cost of obtaining something we want right now, which is the functionality of what the app offers.

 

Does this topic interest you? Would you like to stay in touch with projects and initiatives in data and IT, email us at info@hconc.org.au with Digital Health as the subject line.

You might also want to listen to this episode of Big Ideas exploring this complex topic.

 

CroakeyGO – Walking and talking for collaborative health content

Social journalism project Croakey is taking a unique approach to gathering consumer input on health with CroakeyGO. The project brings people together to walk and talk about health issues and to collaboratively produce social media and other editorial content.

In August, North Western Melbourne Primary Health Network (NWMPHN) supported a mental health CroakeyGO, #NavigatingHealth, following the footsteps of a patient journey through the mental health system. Consumer feedback gathered during the partnership project will help guide mental health commissioning and inform the PHN’s Regional Plan for mental health.

The event involved about 100 people from diverse backgrounds. The group stopped at four different locations: a public hospital ED, an Aboriginal health service, a community health service, and a general practice. It looked at the issues faced by different parts of the mental health system and how a person’s care journey is impacted by where they first seek care.

There were speakers at each stop, but importantly all participants were given the opportunity to be interviewed about their own issues and concerns. This was supplemented by hundreds of people engaged with the event and conversations via social media.

“First and foremost, we wanted to listen to our community about what they think is needed in our mental health system,” Mary-Anne Toy, NWMPHN Director of Strategic Relations, said.

“What was working well, what was not working, and how we could make the system fairer and better. We wanted to get as many perspectives as possible. We also wanted to share our work and approaches and build new connections so that we can work together to create better care for our community.”

NWMPHN recognised that collaborating with CroakeyGO would have the potential to have greater impact, reach and engagement than previous meetings or consultations.

“It went even better than we hoped. We had twice as many people as we’d calculated would turn up in real life. And people loved participating, from our own staff to consumers, carers, service providers and academics. From people who knew us to people who didn’t really know what a Primary Health Network was but turned up because they cared about our mental health system,” Ms Toy said.

“What surprised us was how much our own staff loved the event.  It reminded everyone that we’re all in it together and how important it is to get out ‘on the ground’.

“Listening to people at the four partner stops talk about what they did was illuminating – even for those of us working in the field, there’s so much we don’t know about the system and hearing people’s stories is always powerful and humbling.”

Victorian Aboriginal Health Service (VAHS), St Vincents Hospital, Drummong Strett Services and Carlton Family Medical photographed at Fitzroy on Thursday,01 August 2019 in Melbourne, Australia. (Norm Oorloff/1826 )

 

This article was originally published in Health Matters 

Communication and kindness: Using my voice as a consumer and carer

By Deb Letica, consumer representative

Life is an interesting journey that unfolds before us, sometimes leading us to opportunities that we never considered.

I have mostly enjoyed a good quality of health so far. It was not until I had some health issues such as Graves’ Disease, over prescribed thyroid medication, emergency appendicitis and discovering my much-loved younger brother had a rare genetic neurogenetic disease called a leukodystrophy that I became passionate about health.

My lived experience motivated me to become involved in the health sector, starting out as a member of the Consumer Advisory Council at my local hospital.

I attended Health Consumers’ Council consumer training to understand how the health system works and why my voice as a consumer/carer was important. I learnt how to use my experience to have a strong voice for systemic improvement in the health system.

From those small beginnings I have grown in confidence and contribute in a systemic way at a state level with the Department of Health (DoH), South Metropolitan Health Service (SMHS), and WA Primary Health Alliance (WAPHA), and on a national level in training health professionals.

I’ve learnt how the systems operate, the rigorous safety and quality standards, the NSQHC Standards, accreditation of our hospitals, and the importance of training our health professionals of the future. On a personal level I’ve learned how to better navigate the sector, how to advocate on my own behalf and on the behalf of people I care about.

Integrated care is important to me. I think that many vulnerable people fall through the gaps when they are the ones that can teach us so much more. Even when we are diagnosed with a chronic health issue trying to navigate the two systems when you’re not feeling too well can be overwhelming. In fact, it was a complete surprise to me to discover that integrated care wasn’t the norm!

Communication is one area that needs improving when it comes to consumer engagement. Consumers/carers just want CARE (Communicate, Access, Respect, Experience) for a good patient experience. The key to enabling this to happen is kindness. Kindness enables conversations to happen about things that matter to us, what’s important to us. Put us at the centre of the care team and please all communicate with each other!

Kindness doesn’t cost anything, but it can make a profound difference to others. It gives consumers and carers the confidence to ask questions, increase their understanding and health literacy, and it makes them partners in the planning of their care.

Kindness is life changing – it builds trust which then builds collaboration and partnerships. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets.

Kindness is the enabler for everything that matters to each of us.

I strongly encourage everyone to become involved in the health sector as a consumer/carer rep.  It’s important to give back to our community, to make the world a better place for us all.

Deb Letica is in a hopsital room, holding a file and speaking to another woman

Photo of Deb Letica by SMHS

*This article was originally published in Health Matters 

Breast Implants – national recall

CONSUMER ALERT – The Therapeutic Goods Administration (TGA) continues to review and assess breast implants available in the Australian market. For more information and the latest updates, see the TGA’s online breast implant hub.

  • On 2 August 2019, the Allergan company voluntarily recalled their un-implanted Biocell macro-textured breast implants and tissue expanders due to a risk of breast implant associated anaplastic large cell lymphoma (BIA-ALCL), a rare cancer of the immune system. Another company also cancelled their product (Emergo Airxpanders Aeroform tissue expanders)
  • On 26 September 2019, the TGA published its decision to recall and suspend a number of other breast implants and tissue expanders. The full list of recalled and suspended products can be found on the TGA’s Breast Implant Hub.

The TGA has developed a fact sheet for consumers regarding the Allergan recall. The TGA fact sheet states that:

If you have symptoms such as pain, swelling, a rash or a lump in your breast, armpit or elsewhere or you are not sure about changes in your breast, please discuss these with your general practitioner (GP), surgeon or other appropriate medical professional as soon as possible.

Patients can also call HealthDirect on 1800 022 222 for further information.

World Patient Safety Day

Today, 17th September, is World Patient Safety Day – a day where 194 countries come together to recognise patient safety as a global health priority.

The slogan for the day is “Speak up for patient safety”, to increase public awareness and engagement, enhance global understanding, and spur global solidarity and action.

So what can you do to speak up for patient safety?

If you are a patient or caregiver

  • Be actively involved in your own care
  • It is good to ask questions; safe health care starts with good communication
  • Be sure to provide accurate information about your health history

From our work with health consumers, and from the personal experience of some of our staff, being prepared to speak up when you know something is not right with your care is a critical element in patient safety – even in the face of health professionals not immediately agreeing with you.

It is only by advocating for yourself, learning as much as you can, and feeling OK about asking questions that you can get the best health care. There are resources available to help you speak up and become more active in the important decisions around your healthcare.

The Choosing Wisely “5 Questions to ask your doctor” is a great prompt for starting important conversations with your doctor about your care.

The Question Builder tool can help you prepare for appointments. By creating a list of questions that you can print or email to yourself, you can get more out of your time with your doctor and remember what you want to discuss.

If you are a public health advocate or from a patient organisation

  • Promote patients’ voices in their own safe care
  • Advocate for safety in health care as a requirement

We have compiled these Self Advocacy resources that you may wish to share to help others advocate for themselves.

If this is an area you’d like to get more involved in, take a look at our Consumer Representation training. Consumer Representatives play an integral role in the Australian health care system. They provide vital information and ideas from a service user’s perspective, to health services and government committees. We can help you use your experience as a patient or carer to create a better health system.

If you are a health worker or health care leader

  • Engage patients as partners in their care
  • Work together for patient safety
  • Ensure continuous professional development to improve your skills and knowledge in patient safety
  • Create an open and transparent safety culture in health care settings
  • Encourage blame-free reporting of and learning from errors

If you are a policy maker

  • Investing in patient safety results in financial savings
  • Invest in patient safety to save lives and build trust
  • Make patient safety a national health priority

If you are a researcher, student, academic, or professional institution

  • Generate evidence to improve patient safety, your research matters
  • Encourage research in patient safety
  • Incorporate patient safety in educational curricula and courses

If you are from a professional association, international organisation or foundation

  • Promote patient safety for achieving universal health coverage
  • Provide learning and development opportunities for patient safety

Improving engagement practices – people with disabilities share their feedback

People With disabilities WA (PWDWA), Health Consumers’ Council (HCC) and a working group of people with disabilities have recently been working on a partnership program together—Empowering Health Consumers’ with disabilities.  Sam and Pip from PWDWA and HCC identified the opportunity to improve the experience of people with disabilities in the health system.  With funding from an Information, Linkages and Capacity Building (ILC) grant, staff from PWDWA and HCC supported a group of people with disability to create and deliver information sessions to people with disabilities and staff.  The work we have done together has been a great learning experience on how we can better engage people with disabilities.  So others can learn from this project,  members of the working group shared their thoughts on how services could involve people with disabilities differently—here are some of their responses.

What would you like to see change to better involve people with disabilities in engagement activities?

“Let organisations know that there are lots of people with disabilities who are willing to share their lived experiences”

“Organisations would need to understand the life experience that a person with a disability brings to the group.”

“That people find out who they can turn to for expert advice about making activities and communications accessible”

“Education of the community that there are a lot of people with disabilities who would love to be involved. It should be mandatory that all boards or committee should have at least one member with a disability”

 

What are some of the barriers that might stop yourself and people with disabilities from participating in engagement activities? (e.g. working groups, community advisory groups)

“Physical access, not flexible whether you can use alternative method of participation e.g. Skype, interpreters, etc. Finishes too late at night (after 8 pm) Not near reliable public transport.”

“A lack of understanding of facilitators of what life experience and background a person with a disability has to offer”

“Most working groups or advisory committees usually meet during my work hours. I may not be paid for my time and service on those committees. I may not have the expertise to speak on behalf of people with diverse disability than my own. Cost of travel to and from the meetings maybe too high.  Pay for the time and services of the person with disability sitting on that committee just as all the other members of the committee are getting paid. Meet their travel cost. Make sure that the person has some experience in the area of your work group meeting purpose and or the advisory committee”

“Knowing about them in the first place – I think it’s important to ensure that people with diverse disabilities are considered as a “must include” group when engagement activities are being planned. Being able to physically participate – consideration should be given to how to make engagement activities accessible to all Not being given the opportunity.”

“Health – like if am sick or in hospital. I know some of my peers are house bound and they are happy to attend remotely but can’t always get there.”

 

Do you have any advice for organisations that would like to find people with disabilities for engagement activities?

“Broaden your perspective of disabilities to beyond what’s visible.  Acknowledge that people with disabilities can often work and recognise that while not everyone chooses to disclose. If you provide info in a non-threatening way you might find them in your workplaces and neighbourhood. Consult with GP’s, community groups, Facebook and places like the Arthritis Centre and other places who have newsletters. Schools, Youth Centres, Youth Disability Advocacy network and Youth advisory councils. LinkedIn, Facebook, YouTube, Instagram”.

“Approach disability advocacy and support agencies, disability service providers, peak bodies etc.”

 

Some additional lessons that the HCC team has learnt from this project include:

  • A major issue is ensuring information is accessible in the first place.
  • Video content should include captions: a great way to do this quickly and at a low-cost is to use YouTube’s auto-captioning and edit where necessary.
  • Provide plain-text versions of material: uploading a plain-text version—and ensuring the headings are accessible through navigation—is a quick task that can make our materials even more accessible.
  • Keep our written content simple: everybody has a different level of reading comprehension but using simple English as a standard is a great place to start if we want our material to be accessible.  To provide information accessible to many people with intellectual disabilities, Easy English versions should be available.  We have produced the written resources from this project in Easy English and are available at this link if you would like to learn more.
  • People with different disabilities – for example, physical, sensory and speech, intellectual, psychosocial – may have different needs in terms of what information and how it’s communicated. This may take time to plan and organise so that information is accessible to all at the same time.

Rebecca’s Story

By Rebecca

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Palliative Care – or Quality of Life Care?

By Pip Brennan, Health Consumers’ Council Executive Director

On Saturday 20th July I attended an event in the community, run by the Uniting Church on the Voluntary Assisted Dying Bill. One of the speakers was Emma-Jade Sanderson, who is the Chair of the Joint Select Committee on End of Life Choices. The My Life My Choices Report from this committee is a weighty 600 pages, and a 16-page summary of the report and the response from the current government is also available.

As we noted in pages 9-10 of our Autumn edition of Health Matters, there are divergent views on end of life choices. A key concern from disability advocate Sam Connor was the systemic discrimination of people with disabilities, and the plea to be assisted to live, before being assisted to die.

Our submission to the WA Voluntary Assisted Dying Legislation Consultation echoed this concern. We also noted that “In truth, VAD is going to be accessible to very few people.” What is going to make the most difference to the most West Australians we believe, is access to good quality palliative care.

It would be wonderful if palliative care had more positive community connotations – about living well, having choice and comfort from distressing symptoms.

So I took great heart from Amber-Jade Sanderson’s reflection that whenever there is a focus on voluntary assisted dying in any jurisdiction around the world, more focus and funding is put onto palliative care. And right now there are important opportunities to influence palliative care/ quality of life care.

Your opportunity to have a say on Palliative Care

Summit

On Saturday 24th August there is an important opportunity to have your say on palliative care. A summit is being convened at the Perth Convention and Exhibition Centre:

  • 7am Breakfast
  • 9am Summit

You can book for both (“with breakfast” option), or just for the Summit (“without breakfast”) option.

This is an opportunity to bring together everyone interested in the delivery of palliative care in Western Australia – Health professionals, general practitioners, palliative care specialists, health consumers and carers. It aims to shape how we put into practice Recommendations 7-18 of the My Life My Choices Report, the Palliative Care Strategy 2018 – 2028 and relevant Sustainable Health Review Report 2018 Recommendations. Attendees are encouraged to share their experiences to provide insight and influence the provision of high quality palliative care for all Western Australians. It is a partnership event with Palliative Care WA, WA Country Health Service, WA Primary Health Alliance, Palliative and Supportive Care Education and the Health Consumers’ Council of WA.

An additional session will be held by video conference from multiple sites across regional WA for those unable to travel to Perth on Monday 19 August from 10am to 1.00pm.

Please note that the registration form requires you to complete the job title and place of work. You can just complete “Consumer” or “Carer” for both Job Title and Company/ Organisation. For address you can complete your own address or write the words “Home Address” if you don’t want to complete this information. You can repeat your home number or mobile number for Work Phone.

Register Here

Survey

Whether or not you want to attend, you can have your say in this short survey – you can have a look at the questions here before you jump online and complete the survey.

Complete the survey here