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When COVID-19 hit the headlines early in 2020, there were big concerns around how people would be able to maintain strong connections with their peers and communities, while self-isolating, working from home, and spending more time on their own.

It was fascinating to see how organisations around WA pivoted their activities to make sure people could still connect and get the support they needed. We take a look at how that unfolded for several key consumer organisations, and the lessons learned about community during a global crisis.

People With disabilities WA

People With disabilities WA have always done a lot of work through phone and email so the biggest shift was ensuring that these things could still happen while staff have been working from home. We were aiming for as little disruption for consumers as possible and the biggest issue was that some of our group meetings for projects had to move from face-to-face to an online Zoom or other format.

What we found was that for most of the people with disabilities that were part of these groups, doing a meeting via Zoom was a lot easier and made them more able to attend and participate. This was the same for some of our individual advocacy work where people with physical disabilities in particular and disabilities which made it difficult to access transport were much more comfortable using tele or videoconferencing. However, for others with different disabilities, Zoom meetings were and are more difficult.

We found that there was a very little change in the amount of interaction and communication that we have been getting from consumers. Certainly there has been no decrease in the need for advocacy whether things were COVID related or not.

For our individual advocates and our project staff we will be continuing to use Zoom and Microsoft Teams as a way to connect with each other and with people coming to us for support. Our staff are seeking more flexible arrangements with their work, and our technology and understanding of technology has increased to allow that flexibility to happen both for our staff, and the way we interact with consumers. These are absolutely things that we need to keep in place and will be keeping in place into the future.

Consumers of Mental Health WA

Consumers of Mental Health WA (CoMHWA) created and maintained a central hub of resources for consumers and provided education and upskilling to peer support workers working through these changing times.

They increased their social media presence and encouraged ongoing engagement with members through online means. To support this, they recorded video messages from staff and produced resources for how to use online video conferencing.

CoMHWA provided a continuity of support through transition to phone and online meetings where appropriate. They ensured phone and in-person support resources were mailed to members, to ensure that members without technology or internet access where still able to reach needed supports.

CoMHWA found many people responded positively to these changes, stating that the information being made available was useful and a welcome distraction. Importantly, they noted it was great to still be able to connect with others.

However, some consumers found the technology difficult to navigate or did not have access to technology. Others found it hard to engage with others effectively in this way, with one consumer saying it was “harder to stay focused in online meetings due to the lack of active engagement activities and interaction”.

On the whole, many consumers want the provision of education and groups to continue online as the accessibility and flexibility is more suitable to their needs, with one consumer saying “thank you so much for this series, it has been very helpful”.

While reliance on technology solely reduces access for some of the population, peer support can be useful to assist people to overcome some technology barriers.

Engaging via video conferencing increases accessibility for some of the population, and a key factor to successful engagement is regular, short sessions.

Online delivery of webinars/meetings/groups will continue as an option to allow access as CoMHWA works towards a ‘new normal’. The lessons learnt from this period will be used to ensure the broadest access and distribution of information, resources and supports.

Carers WA

When Carers WA had to cancel their face-to-face services, they relied on phone, Skype, email and Zoom to stay connected with their community.

While there was a good response to this change, many were keen for specific services, such as social support groups, education and training sessions, to resume in a physical format.

On an organisational level, Carers WA learned that while working from home is technically possible for some roles, it didn’t work as well for others. However, the organisation plans to consider more flexible working for the future, maybe mixing office and home working where practical.

Looking to the future, Carers WA note that many of their services are provided remotely as the norm so these will continue. While they don’t plan any significant changes in service delivery, they will have more scope to hold meetings with others service providers or interstate people and organisation online through Zoom.

Health Consumers’ Council

Our biggest priority over the last few months has been to mitigate the risks to our staff and community, while maintaining a focus on connection. Like many around the country we took our work online, connecting with our own team, consumers and WA Health through Zoom, Microsoft Teams, Scopia, and other online platforms.

As everyone began to adapt to a new way of doing things, our engagement team began to upskill in hosting engaging, interactive online events, and we hosted introductory sessions to help consumer navigate Zoom.

We heard that opportunities for health consumer, carer, community and family representatives to connect with each other, with the health system and with organisations like us became even more important, as many in-person opportunities were postpone or cancelled. We quickly convened a COVID-19 community of interest, so that our executive director Pip Brennan could contact a ready source of consumers and carers for surveys, feedback, consumer opportunities and online forums.

Our fortnightly online drop-in sessions brought a lot a value to the community, providing the space for an informal, online get together with anyone involved or interested in consumer, carer, or community representation. In particular, they gave us a chance to involve people in rural areas who may not otherwise have been able to make it to a consumer event in Perth. Overall, we had about 120 participants across the five fortnightly sessions.

We listened to what we were hearing from consumers and their questions around COVID-19 and got involved in more online events. Our fortnightly Fireside Chats with WA health experts allow for interactive Q&As with the likes of the Director General David Russell-Weisz, and Assistant General of Clinical Health Excellence, James Williamson.

We continued to work closely with health consumer peaks across Australia, partnering with Health Issues Centre for a series of online forums exploring COVID-19 and Australia’s recovery from the pandemic. These workshops were attended by several hundred people and featured guests like Victoria’s Chief Health Officer, Professor Brett Sutton and Deputy Chief Public Health Officer and Executive Director Health Protection and Licensing Services, Dr Chris Lease.

Throughout it all we used social media and email to keep in regular contact with our community, not just about our own engagement activities but with reliable COVID-19 updates, consumer opportunities, and other ways to stay connected with community during challenging times.

This sense of connection and being able to reach a wider audience has been something we will carry with us as we establish new ways of working in the wake of COVID-19. We’re committed to finding a good balance between in-person and online events that removes as many barriers as possible for those wishing to attend, and will continue to look at ways to make our engagement activities more accessible to all.

Befriend

*Befriend is a West Australian community development organisation sparking inclusive, connected communities. They operate community building and consulting services, developing the capabilities of local residents and community organisations to nurture connection and belonging for all people – and have a unique perspective on community connection.

Some of the most adverse effects of COVID-19 on West Australians were the social effects. Physical distancing precipitated social disconnection from each other, at a time when we needed our relationships more than ever. As an organisation that fundamentally exists to nurture connection, we invested to pivot and scale our operations in response to the rapidly elevated community need for social connectedness.

Our community builders pivoted our work in supporting inclusive social networks from place-based to digital, supporting local residents to host online social gatherings that offered a relevant alternative to help people stay socially connected. Our consultants acted in an advisory capacity to support a number of community organisations and local government authorities with designing contemporary service models that would support social and community connectedness within the constraints of physical distancing. For the Befriend Team, it was not a matter of ensuring continued support; it was a time to step up to the call of our purpose.

It was affirming to have so many other people realising what we’ve known all along, what we advocate for at the heart of our work at Befriend – that connection and community are at the heart of community wellbeing, and are essential in sustaining a thriving society. Services can only do so much; it is the strength of our relationships with each other in community that are fundamental to our collective wellbeing.

It’s been a time for community members to realise the value and importance of all members of society – of our elders, of people with diverse abilities, of people from culturally and linguistically diverse backgrounds.

It’s been a time to learn about and reflect on the power of technology in sustaining our connectedness, and to work on our relationship with technology, finding new and different ways to use it whilst managing the ways that it can constrain our connectedness and wellbeing.

As we move beyond the turbulence of recent months, one of our primary objectives at Befriend is to capitalise on the increased awareness of the importance of social connectedness and the increased motivation for community contribution, furthering our community building work to mobilise and support more citizens to become active in nurturing connected communities.

*This article was originally published in Health Matters 

Feedback is a good way of gaining information on areas of strength and areas that need to be improved. In healthcare, feedback can be a key way to improve patient safety and ensure ongoing quality improvement.

Whether your experience was good or bad, sharing your feedback could help raise awareness and lead to improvements.

But we know giving feedback or making a complaint isn’t always easy. In late 2019 we were commissioned by the Department of Health to support them in seeking consumer input about the process of making a complaint and giving feedback. Many people commented on how difficult it can be to find out how to give feedback or make a complaint.

Many people also responded that a prominent reason for not giving feedback was simply that they were not asked, saying there was an opportunity to increase ways to give feedback “in the moment”. People noted that in hospitality, you are asked for feedback at various stages in the process, and that this gave people an opportunity to address any issues when they arise. Ways of making it simpler to give feedback were discussed, including looking at how to use technology to encourage feedback from a wide range of people – for example, kiosks where people can quickly note 😊 or ☹ could help a service get a quick idea of how it’s doing, as well as making it easier for consumers for whom English may not be a first language to give feedback. We really encourage consumers to give feedback even when it’s not asked for, because feedback is the backbone of safety and quality improvements.

You can also keep an eye out for feedback forms that you may be given if you go to hospital (they may be in a folder near the bed) and speak to the person providing your care about how you can give feedback. By taking a look at our self-advocacy resources you can prepare for your doctor’s visit or hospital stay, which may help you feel more confident to ask questions and provide feedback.

You can give feedback verbally, in writing, by speaking directly to health service staff, to consumer or patient liaison staff, to Aboriginal Liaison Officers, or if given a follow up call after discharge from hospital. Many people commented that making a complaint, or sharing some positive feedback can feel like an extra thing to do after you’ve finished at a health service. One way that many people felt was a relatively easy way to give feedback was via Care Opinion Australia (previously known as Patient Opinion – see below).

While many people highlighted barriers to giving feedback that were discussed in these sessions, in the workshop with Aboriginal people, many people described how their experience of racism in the health system impacted on the likelihood and way they give feedback or make a complaint. We heard strongly there is much that needs to be done to ensure feedback mechanisms are accessible and culturally safe for Aboriginal people and will continue to advocate for this.

Many people spoke of how valuable it can be for people to have access to independent support to make complaints to health services. Health Consumers’ Council provides an individual advocacy service, as do a number of organisations like People With disability WA and Carers WA, but we know there are more people who could benefit from this support than are able to access it currently. Again, increasing access to advocacy support is something we will continue to argue for.

We’ve gathered some resources to help guide you on where and how you can give feedback. You can also call us on 9221 3422 or 1800 620 780 (country freecall) for advice on the best way to make a complaint, or for support in making a complaint.

Care Opinion Australia

Care Opinion Australia, previously known as Patient Opinion Australia, is an independent online platform for people to provide feedback on services.

At www.careopinion.org.au anyone can share their stories about their experience of care. The site covers health and aged care, and community services in Australia, giving service users, their families and carers the opportunity to publish their personal experiences, good or bad, of the care system.

Care Opinion works so well because it gives you a public, but anonymous, way to voice your experience about the services you use. The right people at the service or provider will see your experience and have the chance to respond.

Care Opinion is safe, confidential and independent of services and authorities. Additionally, reading the stories that other people share on Care Opinion may help you choose the best care providers.

If you are unable to write your story on the website, you can speak to Care Opinion in confidence on the phone by calling 1300 662 996 (mobiles may pay charges).

“A couple of years ago my daughter was admitted to hospital. Unfortunately there were some issues that arose during her stay and treatment, systemic issues that meant I didn’t really know who to address the feedback to. I had known about Patient Opinion [now called Care Opinion], that her experience would be public and that the hospital would be required to respond publicly. It seemed like a good way of raising the issues that we had, and it was. We received responses from the EDs of the services involved, which meant that the people at the top were aware of what had happened and were willing to make changes. Patient Opinion gave us the chance to tell our story, for it to be read by people who have the power to make changes and for us to feel like we were heard.”

How to make a complaint

Feedback can be a powerful way of improving the health system for yourself and others, however we recognise it can sometimes be a difficult or emotional path to travel. Health Consumers’ Council can support you through this process.

You can find resources to help you write a complaint to a hospital and apply for your medical resources on our Useful Links for Self Advocacy page.

The first step in making a complaint is to be clear about what the problem is and what exactly you are making the complaint about. This is sometimes called identifying the key issue.

You may then want to call the health service to ask about their complaint process (how you would go about making a complaint). Avoid going into details of the complaint unless you are sure the person you are speaking to is the one who receives complaints.

In some cases, we recommend making your complaint in writing. That way, someone becomes responsible for writing back to you, and your complaint is more likely to find its way to the right person or place for action. Always phone the service first to find out the name and title of the person you should write to. When submitting a complaint in writing, be firm but polite and keep your message to the point. If you do not have access to a computer, do not be put off – handwritten letters are fine.

Most, if not all, complaint agencies will allow you to have an advocate (someone who can act on your behalf) to help you put your complaint into writing if you are not confident about doing so yourself.

Health Consumers’ Council provides an advocacy service to assist health consumers in making complaints. We are an independent consumer advocate organisation and are able to support you through the process.

*This article was originally published in Health Matters 

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

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.