As consumers and staff of NSW Health, we must recognise that disability is not a limitation but a diverse aspect of human experience. By creating an inclusive environment that values and celebrates every individual's unique contribution, we foster a sense of belonging that enriches us all. That’s why embracing diversity and inclusion is an essential step towards elevating the human experience.

The journey towards disability inclusion is also a journey of empowerment and advocacy. Inclusion goes beyond rhetoric; it requires action and structural change. We must work together to break down society’s barriers and create spaces that are accessible and accommodating to all. It is our responsibility to ensure that all individuals, irrespective of their abilities, can participate in every aspect of life.

 Ban Ki-moon, former UN Secretary-General

An inclusive world is a richer world, one that recognizes the beauty of differences and the strength of unity. Disability inclusion is not about changing individuals to fit into society; it's about transforming society to be more accepting, accessible, and understanding. By embracing this ethos, we demonstrate the true test of our humanity, as highlighted by Mahatma Gandhi: "The measure of a civilization is how it treats its weakest members."

Disability inclusion is an ongoing journey towards creating a harmonious society that celebrates diversity and empowers every individual. Let’s embrace this journey with kindness, compassion and determination, because when we elevate the experiences of people with disabilities, we elevate the human experience for all. As we take these strides, we enrich our communities, foster innovation, and create a brighter future that is inclusive and equitable for everyone.

Please get in touch with the Ministry of Health Experience Team if you would like to share your thoughts on how we can collectively improve the experiences of all people who come in contact with NSW Health.

I am delighted to see so many great projects showing leadership in NSW Health on disability inclusion and on improving how we meet the healthcare needs of people with disability highlighted in this edition of the newsletter. This work demonstrates the important role we all have and the difference we can all make. These are tangible ways NSW Health staff are contributing to the design and delivery of high-quality, effective, accessible and safe healthcare for people with disability.

This newsletter highlights key activities in raising awareness and improving accessibility and aligns with our current work at the Ministry where we are preparing to release the revised policy directive Responding to the Needs of People with Disability During Hospitalisation. 

This policy outlines the requirements for planning and delivering health services for people with disability as well as how we can be inclusive and person-centred, make reasonable adjustments to meet disability-related needs and partner effectively with others supporting people with disability. Also we are preparing the next NSW Health Disability Inclusion Action Plan (NSW Health DIAP) which will guide strategic future disability inclusion activities. This plan has a key focus on how we continue to improve access to health services and to support the employment of people with a disability. Partners from the health system, the disability system and people with the lived experience of disability, carers and families will be consulted in the design and delivery of the NSW Health DIAP.

Unfortunately, deafness is often seen as a deficit by clinicians, though for people in the Deaf community it is their culture and identity and something most Deaf people are very proud of. Many people who are Deaf would not choose to be hearing given the choice.

In response to a number of Deaf patient complaints, Hunter New England Local Health District’s (HNELHD) Multicultural and Refugee Health created the Deaf Engagement Project to enhance understanding between the Deaf community and HNE clinicians.

Jay Jones, Multicultural Health Liaison Officer, organised Deaf community engagement sessions so the Deaf community could come and explain how they experience health services.

“Uniquely, these sessions were Deaf-led and conducted completely in Auslan by Deaf Australia CEO, Jennifer Blyth. There were interpreters in the room – but this time it was for me and my hearing colleagues,” says Jay. “It was a massive perspective changer.”

The substantial feedback from the Deaf community and clinicians highlighted one of the key barriers to a good patient experience was a lack of training for staff in how to interact with Deaf patients. This lack of understanding of their community, and the poor use of interpreters, made many fearful of accessing public health services.

The project team collaborated with Jennifer Blyth and Anne Sheppard, local Deaf consumer advocate, on three short patient experience videos to help staff understand the challenges that Deaf patients face in accessing services.

These were posted on a new HNE intranet page which provides tools for staff to familiarise themselves with what Deaf patients and families expect from their healthcare. Also on the page are Deaf engagement videos (NSW Health staff access only) where Jennifer Blyth answers specific questions about the communication needs of Deaf patients.

So far, the Deaf engagement project has been shortlisted as a finalist in the HNE Excellence Awards (Transforming Patient Experience category) and received a nomination for the Australian Council of Health Care Standards: Quality Improvement Awards.

Ashley Young, Service Manager, Multicultural and Refugee Health hopes the award nominations will give greater exposure to and understanding of the Deaf community and what they need to make healthcare more accessible for them.

“It really has been amazing work by the team around Deaf patient experience and clinician awareness. There is still a lot of work to do, but we’ve started.”

People with a complex developmental disability will receive greater support for their overall health at Westmead Hospital, following the successful trial of a new ‘one-stop shop” clinic that provides free and comprehensive routine health checks.

A group of Western Sydney Local Health District (WSLHD) specialists volunteered their own time for the trial, to help fill a nationwide gap in care for Australian adults with complex disabilities.

Dr Peter Smith set up the clinic in 2020 alongside rehabilitation physician Dr Rummana Afreen, after noticing people with complex disabilities were turning up in emergency departments with otherwise preventable conditions.

“Adults with severe physical and intellectual impairments are extremely vulnerable and can present with complex health conditions that require specialised support,” said Dr Smith.

“Transportation to hospital, GP follow-up and access to specialist services may be difficult. This is why the “one-stop-shop” model is so beneficial to patient care.”

“One-stop shop” patient Zahara with father Fadel Alnadaf

In May 2023, the clinic was granted $50,000 a year by WSLHD to continue providing access to up to nine different specialty health checks for patients.

All treatments are specifically tailored to the needs of people with a complex developmental disability, ensuring patients can receive their checks as comfortably as possible.

For some patients, the clinic uses opportunistic sedation which allows patients with cerebral palsy (for example) to tolerate botox injections to help relieve muscle stiffness. 

While under, several other health professionals provide routine tests such as blood work, dental checks, scans, eye tests, ear checks, urine and bowel assessments.

“We think this is one practical way to improve the quality of life for people with disability,” explained Dr Afreen.

“We also believe that sedation for painful procedures, particularly in the context of someone who cannot understand the nature of their treatment, is quite simply the right thing to do.”

Both doctors would like to see this clinic model become part of mainstream practice.

The Carer Support Service at North Sydney Local Health District provides a unique service to carers. We assess their individual needs and connect them to services that can provide financial, practical and emotional guidance.

Hand in hand with this community outreach, we importantly provide in-hospital support to carers. 

One particular in-hospital support is the Carers @ the Bedside program. We provide carers with a recliner chair, linen and meals so they can be at their loved one’s bedside overnight.

This allows the carer to act as a valued partner in the patient’s care, helping to make the experience more personalised and often reducing the need for readmission after discharge.

The program is proving a win-win for everyone. As Jacqui (pictured on right with mum and carer Linda, and Pink Ladies volunteer, Joy) who has a rare form of dwarfism, explains:

"Having mum, who's my full-time carer, in hospital staying with me is a weight off. She knows me inside out, knows how my body works and the way it needs to move and she can provide help, like with brushing my teeth, going to the toilet or getting dressed. It takes pressure off the nurses, who are busy."

Linda says the program is invaluable and has meant she's able to use her knowledge as Jacqui's carer to provide day-to-day support and advocate for her daughter.

“Unfortunately, because of Jacqui’s condition, we’re frequent flyers in hospital. It can be stressful. Carers @ the Bedside is a good package deal!” jokes Linda.

“I am very grateful for the supportive staff at Royal North Shore Hospital. They are willing to adapt and listen. They really make us carers feel we’re included and part of the care team. It makes us feel involved in the care system, which can be complex and hard to find your way in.”

Communication for Safe Care is an exciting collaboration between South Western Sydney Local Health District, Western NSW Local Health District and the University of Sydney.

This groundbreaking research and co-design project is aiming to make public healthcare more accessible and safer for people with communication disabilities, whether the service is metropolitan, regional, remote or via telehealth.

Communication disability covers a broad range of conditions including intellectual disability, neurological injury/degeneration, autism spectrum disorder, communication disorder (such as developmental language disorder or speech sound disorder) and psychosocial disability.

Research shows people with a communication disability report that their access to community and health services has been impacted. Verbal or written communication failures can result in errors, misdiagnosis, inappropriate treatment and poor care outcomes.

The project team is working closely with consumers with lived experience and healthcare workers to gather data. This process of collaboration and co-design will allow them to translate current evidence and best practice to create communication accessible healthcare environments.

Watch a short video about communication access (featured in the ETHE June newsletter).

If you would like more information, please contact the Communication for Safe Care Project team: SWSLHD-CommunicationForSafeCare@health.nsw.gov.au

Consumer feedback is driving lots of great accessibility improvements as part of Nepean Hospital’s Stage 1 redevelopment.

Nepean Blue Mountains Local Health District consumers have been instrumental in changes to the design of the lifts and lift lobby in the new Clinical Tower resulting in the addition of accessibility features like:-

Watch consumer representative Matt Roger talk about the improvements in this short video. 

Another consumer-driven feature of the redevelopment are high-contrast patient rooms to enhance safety for patients admitted with dementia or cognitive impairment.

These are just some of the improvements that benefit will all consumers and allow them to be safer and more independent when accessing local hospital facilities.

Over 2,500 Australian and international delegates gathered in Sydney last month for MedInfo 2023 – the 19th world congress on medical and health informatics. eHealth NSW was a host partner in the prestigious global event.

The event theme, The Future is Accessible, aimed to inspire conversations and action around working together to build an accessible health sector. Disability was a key focus of the program.

ABC National Disability Affairs Reporter, Nas Campanella, presented on some of the challenges she faces when accessing the health system. After many hospital stays during childhood, Nas shared that she sometimes finds the smells and sounds of hospitals triggering. She noted that while a patient’s electronic medical record alerts clinicians to allergies, they are not alerted to a patient’s disability or complex trauma in the same way.

“I don’t want to repeat my story every consult. It takes 15 minutes of a precious consult and it’s retraumatising,” Nas said. The session sparked a discussion on helping patients, especially those with disabilities, share their stories more effectively and safely.

Conversations on accessibility continued at the NSW Health and eHealth NSW exhibition stand, with hundreds of delegates stopping in to talk with the team.

The Elevating the Human Experience zone showcased our work on Patient Reported Measures, the HOPE platform, the NSW Digital Baby Book, All of Us and Zara’s Journey. Delegates discussed everything from involving consumers in program design to how to bridge the digital divide and make healthcare accessible for all.

It was an exciting five days sharing ideas, advancements and innovations to build a more connected health sector. After attending MedInfo 2023, we agree the future is looking accessible.

Have you explored All of Us: a guide to engaging consumer, carers and communities in NSW Health?

All of Us is our first statewide guide to consumer, carer and community engagement, providing high-level guidance to working together respectfully and with care.

It has six ways of working to show what needs to be in place for engagement to go well. It features videos, tools and tips to support people leading and taking part in engagement activities.

We would love to hear how you are using it. If you’d like to tell us, or if you would like more information, please email the Ministry of Health Experience Team.

During July, approximately 90 staff and consumers registered to join a conversation about visitation.

We have held virtual focus groups with 30 staff and consumers deeply listening to their voices about how visitation is working across NSW Health and what makes an exceptional visitation experience.

We are working on continuing the conversation, hearing more stories and experiences.

If you are interested in sharing your stories and perspectives or would like to stay connected with the visitation work that is underway, please register to join the conversation.

NSW Health staff share your perspective of what makes an exceptional visitor experience here.

Patients, families, and carers, share your stories about what makes an exceptional visitor experience here.

The 2023 Patient and Family Experience Symposium celebrated young people and transitions of care from Paediatric to Adult.

Held in the beautiful grounds of Callan Park, Rozelle, it was wonderful opportunity to explore the unique partnership we have with our patients, families, carers and staff. The day was emceed by the fabulous Hannah Diviney, Hannah is a writer, disability advocate and Editor in Chief at Missing Perspectives.

Sydney Education Lived Experience Educator Harry Iles-Mann joined The Children's Hospital at Westmead Youth and Transition Network Manager Deanna Darwall, Cystic Fibrosis Clinical Nurse Consultant Nicole Liaroustos, and Agency for Clinical Innovation Transition Care Network Manager Rachael Havrlant for the final panel.

The Symposium gave patients, specialists and people with lived experience a platform to share their stories and insights with healthcare professionals and District leaders as part of #SydneyInnovationWeek.

Read the full story here.

Since the launch of our newsletter, we have been honoured to feature some amazing stories and conversations about disability from some inspirational contributors.

Photographer, Rachel Callendar turned to language to look beyond her child's disabilities and instead see her 'superpowers'. 

Mandy Hose and Kate Jones chat to each other and friends about parenting multiples with disabilities and additional needs.

Hear how kindness made Dinesh who he is today, particularly after the devastation of a spinal cord injury.

This conversation was presented by speech pathologist Kelsie Davies and clinical nurse consultant Alison Devitt from Western NSW Local Health District.

Orthoptist Kate Thompson’s observations of experiences of blind and low vision hospital in-patients in South Western Sydney Local Health District (SWSLHD) were the spark for a collaborative partnership between the Agency for Clinical Innovation (ACI), Vision Australia and other consumer organisations. This resulted in the ACI’s ‘Experience-based co-design project to improve the experience of people who are blind or have low vision when they are in hospital’.

Congratulations to HealthShare NSW’s Patient Services and Planning team, who took home two awards and a commendation for their outstanding contributions at the annual Institute of Hospitality in Healthcare (IHHC) Excellence Awards in July.

The awards are a national program celebrating individuals and teams who go above and beyond in their normal duties to create a positive impact on patient care and service quality.

Acting General Manager Merina Hadziahmetovic received the IHHC Brightest Star Award, for her unwavering dedication to providing excellent care to patients and customers. Her commitment and compassion set a remarkable standard within the organisation, particularly during the challenges of COVID-19.

The Manly Adolescent and Young Adult Hospice team were awarded the Values in Action/Exceptional Customer Service Award for their invaluable work in supporting end-of-life and respite care for young people with life-limiting illnesses. Their commitment to providing the best patient experience extends beyond mere service delivery; they are driven by a genuine desire to make a positive impact on the lives of young adults and their families.

The Texture Modified Food team also received Highly Commended for Project of the Year, recognising their innovative efforts in improving mealtimes for patients requiring pureed foods.

Speaking after the ceremony, Patient Services and Planning Executive Director Jennifer Van Cleef expressed great pride to see Merina and the AYAH team win against a high calibre of nominations:

“A big congratulations to our nominees and winners, I am incredibly proud to have such talented and passionate individuals as part of our team – it is wonderful to celebrate your achievements.”

The Gathering of Kindness will be held from the 13 – 17th of November and will continue a conversation about kindness and compassion in healthcare. The Ministry of Health has continued its partnership with the Hush Foundation and will host a hybrid program that is focused on ‘My KIND of Experience - Reframing quality and safety’ and the actions and moments that matter to us all in transforming experiences in healthcare.

Your Local Health District, Specialty Health Network, Agency or Pillar can submit an expression of interest to partner with the Ministry of Health to host the Opening of the NSW Health Gathering of Kindness. Grants are available to organisations who are planning on acknowledging and spreading those acts of kindness during the 2023 Gathering of Kindness. Don't wait and apply now. Applications close on Wednesday 13 September.

More information will be released to the system shortly and will be available on the Elevating the Human Experience Intranet site (NSW Health staff only).

NSW Health staff and consumers receive a 20% discount to the Hush Gathering of Kindness event in Melbourne on Sunday 29 October 2023.

The Gathering of Kindness event precedes the opening of the BMJ/IHI International Quality and Safety Congress 30-1 November.

Register using code NSWHEALTH for your 20% discount.

Join Tara Dimopoulos-Bick and David Follent from the Agency for Clinical Innovation for a conversation about Finding Your Way – a shared decision making resource developed by and for Aboriginal people in NSW.

When: Thursday, 24th of August @ 10am

Where: Microsoft Teams 

Click here to join the meeting or NSW Health staff can download the calendar invite here.

This conversation was rescheduled from July.

Finding Your Way is one of the first culturally adapted shared decision making (SDM) resources for Aboriginal people in Australia. It integrates the Eight Ways of Aboriginal Learning (8 Ways) and was created by Aboriginal health workers and community members living and working on Eora, Wilyakali, Gandangara, Wiradjuri, Bundjalung, Darug and Yuin lands in NSW between 20 August and 3 September 2021. Finding Your Way was initiated in response to an urgent need for resources in the context of the COVID-19 vaccines. A mixed methods approach was used to explore the perceived acceptability, usability, and feasibility of Finding Your Way. A modified e-Delphi (incorporated yarning methods) was also used to identify and reach a consensus on the capabilities required to effectively use Finding Your Way.

BHI is pleased to invite you to a workshop designed to share our insights on what is involved in developing and implementing effective patient experience surveys, drawing on what we have learnt in the course of managing the NSW Patient Survey Program over more than 10 years.

The patient experience measurement landscape has developed and grown over that period and a recent audit identified a significant proliferation of local and other surveys, and a need for substantial strengthening and streamlining of patient experience data collections across the system.

We would like to invite you to hear about the principles, considerations and processes that we work with when developing and implementing surveys, and to be part of a conversation about how those principles and considerations could apply locally.

The event will be hosted on Microsoft Teams. Please register via the event registration page.

For enquiries, please email Wendy.Cain@health.nsw.gov.au.

The Health Literacy Hub is shining a spotlight on disability over three seminars in 2023.

This series will explore how these two fields overlap and what we can do to include accessibility in our health communication. Over three seminars, expert panels will discuss strategies for written, digital, and face-to-face communication; reflect on the relationship between health literacy and accessibility guidelines for each of these communication areas; and point to practical resources to help make your services more inclusive and accessible.

Webinar 1: Health Literacy, Disability, and Written Information held on Tuesday 28 August at 11am - 12midday. Register here.

Webinar 2: Health Literacy, Disability, and Digital Health Communication held on Tuesday 12 September. Register here.

Webinar 3: Health Literacy, Disability, and Face-to-Face Communication, held on Tuesday 10 October. Register here.

Do you want to start or continue a conversation about kindness in healthcare and be part of the culture change in NSW Health?

Check out these resources (NSW Health staff only) that help a conversation around the challenges that can be experienced in healthcare such as managing mental health and burnout, bullying, communication breakdown, and patient safety and experience.

We know that when we foster a culture of kindness, we improve collaboration with team members. This improves quality and safety for patients, their families and carers, and our staff with a reduction in errors, improved staff safety, wellbeing, and retention.

The Experience Team recently welcomed over 225 NSW Health staff and consumers to the June 2023 Showcase, the third in the series. The virtual event celebrated four innovative projects that set to transform experiences across NSW Health.

A highlight of the event was hearing from two remarkable consumer leaders. Adam Johnston and Jann Hayman captivated the audience with their insightful perspectives and enriching contributions.

“It’s critical that we stay connected and listen to staff, patients, consumers and families to understand their experiences so that we can drive to improve everything we do” – Deb Willcox AM, Deputy Secretary Health System Strategy and Patient Experience

Watch the showcase on demand and learn more about the development of contemporary Statewide Visitation Guidance, the Staff Experience Leads Projects, Consumer Remuneration Guidelines, and the First 2000 Days of Life and the NSW Digital Personal Health Record (The Blue Book).

Are you interested in showcasing how you, your team, or your organisation are transforming experiences for patients, their families and carers, or our staff and volunteers?  Email the Ministry of Health Experience Team to find out how!

NSW Health has organisational membership with The Beryl Institute, a global community of healthcare professionals and experience champions committed to transforming human experience in healthcare.

As part of our membership, NSW Health staff and consumers can access webinars (including On Demand), publications, professional development opportunities, and communities of practice that focus on human experience in healthcare.

Register now for free membership with The Beryl Institute using this custom link.

Despite being a US based article there are a number of key insights for us to consider

Perceptions of quality and experience are slowly declining. These declines are important for healthcare organizations to consider and reaffirm why a commitment to experience should not be a question and can have significant positive impact.

The consistency with which the top reasons why experience is important is revealing and should serve as a guide to help healthcare organizations prioritize their actions and investments, particularly in tough economic times.

Healthcare organizations can’t afford to lose sight of supporting people’s interest in their own health and wellbeing, their physical needs and their desire for positive outcomes, while being treated with respect and being addressed as a person. These are the critical levers that will ensure experience can be elevated and reinforce how quality elements are truly central to the overall experience organizations provide.

While trust in healthcare settings is high, finding ways to continue to build trust by creating stronger relationships with their patients, providers and the communities in which they operate will be important to improving broader trust in the healthcare system.

Concerns about the healthcare system acting out of self-interest may be addressed by a strengthened commitment to the human experience. This issue underlines both the very real challenges healthcare organizations face and the opportunities they must address with a human-centered lens.

Improving experience is no longer a nice thing to do, but an expectation and critical part of why people will continue to choose a healthcare organisation in the future!

A special issue of the Patient Experience Journal (PXJ), on Emerging Frontiers in Human Experience is now available! PXJ publishes patient experience research from global perspectives across healthcare settings.

An international, open access, peer-reviewed journal focused on research and proven practices around understanding and improving patient experience, PXJ has more than 1,100,000 article downloads in over 220 countries and territories.

Published in association with The Beryl Institute, Volume 10, Issue 2 includes 19 articles representing commentaries, personal narratives, research studies and case studies and covers a selection of topics.

Access the Patient Experience Journal today.

Visit the Elevating the Human Experience intranet site (staff) or the Elevating the Human Experience internet site (consumers and those external to NSW Health) for a range of useful information and resources.

Staff can also access downloadable leaflets and posters to help spread the word to colleagues and around the workplace.

We love getting your feedback on the newsletter, as well as your stories and ideas about elevating the human experience. Send your comments and suggestions to MOH-PatientExperience@health.nsw.gov.au