Improving support for regional oesophageal cancer patients

  • Participants at a recent forum held at Peter MacCallum Cancer Centre for regional cancer patients and their carers.

Participants at a recent forum held at Peter MacCallum Cancer Centre for regional cancer patients and their carers.

Dr Ashraf Tokhi,
Department of
Surgical Oncology,
Peter MacCallum
Cancer Centre;
David Menzies,
Head of PanSupport,
Pancare Foundation

For oesophago-gastric cancer patients, complex multidisciplinary input requires patients to be managed in a tertiary centre. Peter MacCallum Cancer Centre and the Pancare Foundation are working together to better understand and address the unique care needs faced by patients from regional Victoria undergoing treatment for oesophageal cancer.

A recent forum held at Peter MacCallum Cancer Centre allowed regional patients who had undergone treatment for oesophageal cancer, and their carers, to express their feedback on unmet needs during and after their care. Key themes identified as a result of feedback from regional patients included a need for greater service accessibility for regional patients, as well as alternative methods of access to high-quality information regarding their treatment and life after surgery. This includes information derived from other patients and carers – bringing a perspective of the cancer journey unable to be expressed by healthcare professionals.

With the support of the Pancare Foundation and Western Central Melbourne Integrated Cancer Service (WCMICS), a group of patients, carers and clinicians at Peter MacCallum Cancer Centre have created a video resource for those undergoing cancer treatment. This three-part video series aims to serve as a peer-derived guide for future patients and carers, elaborating on the patient experience and providing peer advice for the journey through, and life after, treatment of oesophageal cancer.

Janis Stickland has personal experience as a regional patient with oesophageal cancer and was an integral part of the creation of the video series.

‘The information you find on Google is usually in print, and very medical or based on statistics. It’s very heavy to wade through when you are worried or stressed. The video idea appealed to me as a way for people to build a visual and personal connection with someone who can share their feelings and experience,’ says Janis.

‘Being regional, you feel disconnected from all the action, so we’ve tried to help create something accessible, authentic and real for patients in regional areas where these services connecting patients aren’t available.’

We've Got This. Sharing journeys of patients and carers affected by Oesophageal Cancer. To educate, inform and support. Exploring the needs and addressing common questions of both patients and their carers affected. Scan this QR code
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Building on the work done so far by the team at Peter MacCallum Cancer Centre and Pancare Foundation, further resources are currently being developed to address regional patients’ needs. An informational video is currently being developed to help educate patients on managing their jejunostomy feeding tubes after surgery – allowing for further training and troubleshooting after discharge.

One positive outcome from COVID-19 has been the uptake of telehealth by health services, allowing for a closer relationship between healthcare services and patients, while minimising the burden of travel.

Future plans include a cookbook for oesophageal cancer patients and the creation of a peer-support service, allowing peers to link in with local patients and carers and provide guidance and support in their cancer journey. These increased resources will also help the regional healthcare workforce – who provide the majority of supportive care post-surgery, including symptom management and rehabilitation, and are the first port of call for complications – in delivering local care for complex patients.

However, continual engagement with regional patients and carers is critical to ensure unmet needs are addressed and available resources are accessed by those who need it most. PanSupport – Pancare Foundation’s patient and carer support team – through telehealth, My Care Cancer KITS, support groups and counselling, can and do provide this critical continuity of support to regional and rural patients. This support is complementary to and can take pressure off local workforces, as well as assist community connection and integration beyond formal healthcare settings.

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