If Only He’d Had a My Health Record: Peter’s Story

Often health professionals don’t witness the benefits for patients in having a digital health record. Here’s the story of one couple’s experience and how having a My Health Record could have made a real difference in final stages of health care.

This story was told to Emma Dykes, North Coast Primary Health Network’s Community Engagement and Communications Officer, My Health Record.

As Aaron sits with a cup of coffee in his hand, he stares at the table. He tells of the ups and downs in the journey through the health system during his partner’s liver failure. Aaron says after hearing about My Health Record and how it is used now to coordinate better patient care, he wants to explain what happened to him. He encourages people to consider the ‘what ifs’ before they are faced with a complex medical situation.

Aaron sees the benefits of having a My Health Record – a central point of key health information accessible to health professionals.

A photo of Peter when he was appearing in Kiss Me Kate (2010).

At 70 years of age, Aaron’s partner Peter had retired and planned on spending the rest of his years travelling. Peter had not heard of, or thought about a digital My Health Record, and neither had Aaron.

Unfortunately, Peter’s health took a turn for the worse. Over two years, Peter underwent a number of operations under multiple doctors and specialists and visited both private and public hospitals. As Peter’s health deteriorated, Aaron was left to battle the health system alone.

Because of the complexity of Peter’s health history, Aaron wishes they had known about My Health Record. If so they could have had Peter’s health summary in one place – medications, diagnoses, allergies and test results to show new medical professionals taking over care.

Aaron says that Peter had a Plan of Care with his specialist and they had talked about the declining state of his health. Peter and Aaron both knew that Peter had only months to live and they made a plan to deal with this. Unfortunately, this was not documented where Aaron or Peter could access it, and when moved to a private hospital Peter was placed under a new physician and his care plans were changed.

Looking back, Aaron is most upset about the confusion and limited transfer of information when moving between doctors. He feels that if there had been a My Health Record in place, it would have allowed him to communicate Peter’s history and wishes with the new doctors more clearly. They would have been able to access lists of Peter’s medications, health history, blood tests and health wishes without relying on Aaron’s memory.

Aaron recalls that Peter’s wish was to die at home. He was left to advocate for Peter’s wishes, but to no avail. Aaron says that it was stressful and there was a lot of pressure on him to communicate the facts with the health professionals. Instead of the original plan, Peter was denied palliative care and continued on treatments to prolong his life. The fight continued until Peter passed away in hospital after a traumatic decline in his condition.

Now, several months after Peter’s death, Aaron fights the battle of wonder. He wonders what if? What if there had been better communication? What if the doctors had been able to consider Aaron’s views? What if Peter had had a My Health Record in place that contained his Advance Care Plan, previous history, medications and test results? Would the outcome have been different?

Aaron believes having a My Health Record would have really made a difference to the coordination of Peter’s care. He believes that a central information source, controlled by himself and Peter, could have made the end of life journey a smoother, more pleasant experience.

Aaron now has a My Health Record of his own and has asked his health care providers to upload his information. He has also learnt how to enter his own information into the record through his MyGov account.

Aaron wants to encourage everyone to consider the benefits of My Health Record.

For more information visit www.myhealthrecord.gov.au or call 1800 723 471.

Aged Care Disaster Management Planning

Strategic Priority Area: One team

North Coast is identified as the region most likely to be impacted by climate change in Australia and also forecasted greatest growth in those 65+.

Healthy North Coast takes a lead role in ensuring the older population and the sector that supports them are prepared for, can respond to and recover from disasters and other emergencies.

We have led eight regional disaster management capacity building workshops, bringing together SES, community organisations and the aged care sector.

We have also developed disaster preparedness tip sheets for both residential and community aged care providers.

Voluntary Assisted Dying

Strategic Priority Area: One team

In May 2022, the NSW Parliament passed the Voluntary Assisted Dying Act 2022. Effective from Tuesday, 28 November 2023, eligible people have the choice to access voluntary assisted dying. 

Healthy North Coast has developed a webpage for both health professionals and consumers, with links to available information and resources.

Living with Dementia resources

Strategic Priority Area: No one is left behind

Healthy North Coast has worked with people living with dementia, their families and local service providers to develop an information booklet that will help them connect with local and national supports along their journey.

The booklet includes commonly asked questions for people to ask their GP and/or specialist.

The resource is available in digital and printed copies, with more than 5,000 distributed across the region. An e-version is available to clinicians via the Dementia and Cognitive Impairment HealthPathway.

Deteriorating Resident Triage Tool Pilot

Strategic Priority Area: One team

The Deteriorating Resident Response Tool (DRRT) has been developed to guide RN’s in Residential Aged Care homes (RACHs) to better understand, anticipate and make clinical decisions responding to the deteriorating health of residents.

The objective of the DRRT is to give RACH staff clear information to triage and provide appropriate care for a range of residents’ health conditions, and, in turn, prevent unnecessary presentations to ED.

The tool has been designed together with a specialist geriatrician, consulting with stakeholders such as Residential Aged Care Managers, NSW Ambulance, GPs, and experts from Mid and North Coast LHDs.

The pilot commences in March with four participating RACHs. Evaluation measures will include effectiveness in building RN confidence and reported reduction in unnecessary hospitalisations. Findings will inform a future planned, region-wide implementation.

North Coast Care Finders Program

Strategic Priority Area: No one is left behind

The Care Finders program is a free region-wide service to support vulnerable older people who have no-one else to help them, to learn about, apply for and set up support services.

Care finders can help people understand what aged care services are available, set up an assessment, and find and choose services. They also help people with access to other supports in the community, both accessing services for the first time and changing or finding new services and supports.

On the North Coast, Healthy North Coast has commissioned four organisations to provide this important service: EACH, Carexcell, Lifetime Connect and Footprints.

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Psychological services in residential aged care homes

Strategic Priority Area: Improving Lives Now

Healthy North Coast commissions two service providers to deliver psychological therapies and supports for older people with, or at risk of developing, a mental illness and who are living in residential aged care homes (RACHs).

The aim of the program is to both provide direct support to residents and their families and carers, as well as upskill the RACH workforce to respond to the needs of residents presenting with mental health concerns.

Social prescribing (Healthy Me Healthy Community)

Strategic Priority Area: Securing a Healthier Future

Delivered by Feros Care, the Healthy Me, Healthy Community program aims to build individual and community connections to reduce loneliness and improve wellbeing in Port Macquarie.

The program helps people to connect with community, activities, supports and services that address their broader social determinants of health, as an alternative or supplement to a clinical approach.

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Digital Health in Residential Aged Care

Strategic Priority Area: Improving Lives Now

Timely access to primary health care professionals, whether through face-to-face consultation or telehealth, is recognised as an issue for many Residential Aged Care Homes (RACHs), that in some cases can lead to potentially preventable hospitalisations. RACHs require adequate telehealth facilities to support access to virtual consultations for their residents.

Project goals

  • Assist participating RACHs to have appropriate telehealth facilities and equipment to enable their residents to virtually consult when needed with their primary health care professionals, specialists and other clinicians. 
  • Provide training to participating RACH staff to support them to have the capabilities to assist their residents in accessing virtual consultation services.
  • Encourage increased use of My Health Record by RACHs, to improve the availability and secure transfer of resident’s health care information between RACHs, primary care and acute care settings.
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Greater Choice at Home Palliative Care Program

Strategic Priority Area: Improving Lives Now

Aims to provide people who have life limiting conditions the opportunity to exercise choice and receive high quality care at home, harnessing improved and better coordinated supports and services that meet their individual needs.

Program objectives:

  • Improve access to palliative care at home and support end-of-life care systems and services (in primary health care and community care)
  • To enable the right care at the right time and in the right place (to reduce unnecessary hospitalisation)
  • Generate and use data to support continuous improvement of services across sectors
  • Use available technologies to support flexible and responsive palliative care at home, including in the after-hours.

These objectives will contribute to achieving the following intended overarching outcomes of:

  • Improved capacity and responsiveness of services to meet local needs and priorities
  • Improved patient access to quality palliative care services in the home
  • Improved coordination of care for patients across health care providers and integration of palliative care services in their region.

Education & training funding elibility

Funding is open to all primary care providers within disaster affected communities across the Healthy North Coast footprint.

Workforce Locum support and R&R funding criteria

  • Available to primary care services in disaster impacted communities within the Healthy North Coast footprint.
  • Available to support short-term workforce coverage, allowing clinicians to rest and recover.
  • Workforce-support funding in total is capped for each site, over a 12-month period:
    • $10k for GPs and/or
    • $5K for nursing and/or
    • $5k administration support and/or
    • $5K allied/pharmacy and other.
  • Funding is not to be used to fill gaps in staffing that have not been able to recruit to and not to replace existing staff.
  • Healthy North Coast will assess requirements and approve available funding directly with the service requesting support.
  • Priority will be given to sites that have immediate, short-term workforce support needs.
  • Requests will be reviewed and supported on a case-by-case basis.
  • Program funding administered via RCTI Agreement (Recipient Created Tax Invoice) to be paid monthly, or on completion of the placement (whichever comes first).
  • Practices will be required to complete a request for payment form monthly, or on completion of the placement (whichever occurs first).

Wellbeing Flexible Funding Criteria & Eligibility

  • Open to all primary care providers within disaster affected communities across the Healthy North Coast footprint.
  • Activity must be purposeful, with the aim of increasing the wellbeing of your team.
  • Requests will be assessed on a case-by-case basis, with funding allocated based on team size.*
  • Following approval by Healthy North Coast, funding will be administered via RCTI Agreement (Recipient Created Tax Invoice) upon providing proof of expenses.
  • Funding cannot be used for the purchase of alcohol, or any other goods or services where the vendor cannot quote their Australian Business Number.
  • Planned activities must occur prior to 30th June 2024.
  • Funding will not be available for retrospective activities.
*Team Size
(Total staff and contractors)
Funding Available
Small (1-5)$500-$1500
Medium (6-20)$1500-$4000
Large (>20)$4000-$5000