Engaging rural and regional communities with supportive care in cancer – a lifeline for country patients
In Australia, we are fortunate to have access to some of the best cancer treatments in the world. Major discoveries, such as immunotherapy, provide new treatment options for Australians diagnosed with advanced and aggressive cancers, such as melanoma. Advanced radiation therapy technologies enable highly precise radiation targeting to tumours and less damage to normal tissues. And, as discussed in our recent blog by Dr Fiona Hegi-Johnson, new treatment options are increasingly available for the treatment of secondary (metastatic) cancers. These options extend and improve the quality of life experienced by patients living with advanced disease.
Cathie Pigott, Professor Mei Krishnasamy, Dr Sarah Everitt and Kate Clayton
What is supportive care in cancer?
An essential partner to every medical and scientific advancement is Supportive Care, that is navigation, access and referral to services and resources that provide people with the help they may need following a diagnosis of cancer. The Supportive Care in Cancer Refresh Community of Practice is a new Victorian initiative led by researchers at the University of Melbourne. This initiative provides an open and inclusive forum for people who share a passion for strengthening and embedding supportive cancer care across Victoria. Supported by the Victorian Government Department of Health and Human Services (DHHS), the Supportive Care in Cancer Refresh Project is attended by cancer consumers and representatives from hospital, government and community organisations from across metropolitan, regional and rural Victoria.
Project leader, Professor Mei Krishnasamy, describes Supportive Care as “a broad range of services and resources that include information for self-care and wellbeing, emotional support, financial help, managing work or return to work, symptom and side-effects management, social support, exercise, diet, spiritual support, palliative care and bereavement care”. The supportive care “community” for a person living with a cancer diagnosis therefore includes a broad range of people. Supportive carers include a patient’s carers and loved ones, nursing, medical and healthcare professionals and a range of community organisations.
MediStays support for patients and families travelling for medical care
MediStays co-founder, Dr Sarah Everitt, was delighted to accept an invitation to speak at the recent Supportive Care forum at the Victorian Government Department of Health and Human Services. “This forum provided an excellent platform to share how MediStays is supporting patients from regional and rural Victoria to access cancer care” shared Sarah. She continued “we know that accessing the best cancer treatments can be more difficult for people travelling long distances from rural and regional communities”. This finding was published by doctors at the Peter MacCallum Cancer Centre in Melbourne, who reported that
- Victorians were less likely to access cancer retreatment the further they lived from specialist cancer care (1)”.
- In NSW and the ACT, patients were 10% less likely to access radiation therapy for every 100km they needed to travel (2).
- Queenslanders diagnosed with rectal cancer that lived more than 200km from a cancer centre were 30% more likely to die than those living with 50km (3).
These data are concerning and illustrate that Australians living in rural and regional areas require more support to access the best cancer care available. “It is this evidence, combined with outcomes from rural health organisations and government reports that provided us with the motivation to start MediStays” stated Sarah. She continued “It is unacceptable that Australians requiring specialist medical care away from home should be searching holiday websites for relevant and supportive information about where to stay during cancer treatment”.
“Australian patients and their families deserve relevant and comprehensive information to support them when they need it most”
MediStays Co-Founder, Dr Sarah Everitt
MediStays primarily aims to support patients and carers to access reliable, convenient and discounted accommodation options close to hospitals and medical centres. Sarah explained to the Supportive Care audience that the major travel websites are all owned by one of two major offshore companies (Expedia Group and Booking Holdings). These companies charge high commissions to accommodation providers for every booking made. This is a major limiting factor for accommodation owners wishing to provide discounted rates to patients and their loved ones. Further, holiday websites do not necessarily provide patients with relevant and supportive information such as their proximity to hospitals, wheelchair accessibility or government accommodation subsidy programs. “At MediStays, we aim to support our community with supportive and reliable information. We also aim to increase awareness of important government initiatives, including the Victorian Patient Transport Assistance Scheme (VPTAS)” said Sarah.
MediStays partnerships providing discounted accommodation for patients
Sarah shared with the audience what a wonderful opportunity it has been to partner directly with accommodation providers. “Accommodation owners have been incredibly supportive of our initiative. They have really embraced the opportunity to support patients and their loved ones during this difficult time in their lives” said Sarah. After testing the model with a white label booking solution, MediStays started partnering with properties in early 2018 and now list more than 50 hotels, apartments, B&Bs and not-for-profit patient lodges. “At the moment, MediStays do not process bookings or payments. Our website works by providing patients and carers with a discount code to use directly on the accommodation providers own website” explained Sarah. “Accommodation owners provide MediStays with a discount (promo) code, which our users access by entering basic demographic information including their name and email address. The promo code is used directly on the accommodation providers website, which provides patients with discounts of up to 20% on advertised rates” explained Sarah.
“At MediStays, we contact our users via email with extra information to support them, including meal deliveries, transport, a packing checklist and financial assistance options” said Sarah. She continued “As MediStays grows, we look forward to increasing the number and range of accommodation options and services to support patients and their loved ones when they need to travel for medical care”.
A valuable resource for hospital and medical clinics
Sarah also explained that MediStays is a growing resource for healthcare and community organisations providing supportive care. “We know that many social workers, nurses and practice managers have very busy roles and limited time to spend with each individual patient. MediStays is an excellent resource to refer patients to as they (patients and carers) can independently select and book their own accommodation”. Sarah continued “…. many staff at hospitals and medical clinics across Australia are maintaining their own directories of accommodation options nearby and are also referring patients to holiday websites.
When the MediStays logo is linked directly on websites of community organisations, hospitals and medical centres, staff are relieved of the time and pressure required to maintain these lists” explained Sarah. Until MediStays has a fully comprehensive offering of accommodation options across Australia, patients and healthcare professionals are encouraged to complete the online accommodation enquiry form. MediStays will then explore the most suitable options nearby. MediStays aims to be a centralised source of credible and real-time information for country patients staying away from home with links to accommodation, transport, financial support and meals.
“MediStays is a tremendous opportunity to positively impact the lives of country patients and their families travelling for medical care. Patients share with us that they have every confidence in their medical team but feel completely overwhelmed and uncertain about the prospect of travelling long distances from home and finding suitable accommodation and parking. They are so grateful for our service…. MediStays is only young but it is certainly humbling to take a moment and consider the impact our initiative is already having on the lives of patients and their loved ones” shared Sarah.
Sarah was joined by a diverse range of speakers on the day, including Cathy Piggott, Education Manager Advance Care Planning Australia who discussed the background and updates to Advance Care Planning for patients, families and health care professionals. Our friends at Gather My Crew were represented by their passionate Marketing Manager and Social Worker, Kate Clayton. Kate shared this wonderful initiative and the positive impact Gather My Crew is making on the lives of Victorians diagnosed with cancer. To conclude, Marita Reid, Program Manager Quality and Cancer Outcomes, DHHS shared key outcomes of the Supportive Care Point Prevalence Study.
Professor Krishnasamy concluded the event stating “Initiatives such as MediStays and Gather My Crew offer people affected by cancer a lifeline during what can be some of the most challenging times in a person’s life. For healthcare professionals they offer an invaluable opportunity to enhance the support and help available to their patients”.
“Initiatives such as MediStays and Gather My Crew offer people affected by cancer a lifeline during what can be some of the most challenging times in a person’s life.
For healthcare professionals they offer an invaluable opportunity to enhance the support and help available to their patients”.
Professor Meinir Krishnasamy
- Khor, R, Bressel M, Tai KH, Ball D, Duchesne G, Rose W, Foroudi F, Patterns of retreatment with radiotherapy in a large academic centre, Journal of Medical Imaging and Radiation Oncology, 2013.
- Gabriel G, Barton M, Delaney, G, The effect of travel distance on radiotherapy utilization in NSW and ACT, Radiotherapy and Oncology, 2015
- Baade P D, Dasgupta P, Aitken J F, Turrell G, Distance to the closest radiotherapy facility and survival after a diagnosis of rectal cancer in Queensland, Medical Journal of Australia, 2011