Title: How we can improve the lives of disadvantaged or vulnerable cancer patients
Date: 2 October 2018
Time: 15:50 -16:50
Chair of the session: Laila Rueskov Walther, Danish Cancer Society (Denmark)
WCC Congress 2018, with the theme Strength, Inspire and Deliver, emphasised on encouraging effective knowledge transfer and best practices exchange amongst 3,500 global cancer control and health experts.
On the Track 4, “How we can improve the lives of disadvantaged and vulnerable cancer patients.” Danish, Jordanian and Australian experts conducted a panel discussion on “Maximizing quality of life and death. Empowering Patients and caregivers" on the following sessions.
In the initial session “How we can improve the lives of ethnic minority cancer patients and men with cancer” the speaker Laila put lot of emphasis on the increasing trend of inequality in health and how we need to take care of the men community to give them a space to discuss their problems. She felt unlike Women they aren’t open to talk on their health conditions and needed different approaches to handle the same. It could be through social events or gathering where there a strict no entry of women. Speaker Diana then discussed about the patient navigation project that helped their country to improve the lives of ethnic minority cancer patients. They first opened up a patient support clinical and telephone line. The clinic provided individual and family counselling. The telephone support group typically had more of women’s users usually having medium long or long education. The patient navigation project gave each socially vulnerable cancer patients getting mapped to a navigator who support them during a 6 month period based on the patient’s needs. This navigator mostly had to do around 78% of emotional support and 48% of strengthening the network. The navigator plays a vital role as they help to sure the patient comes to treatment and the follow ups are done as prescribed.
Laila opined that men’s preferences with respect to patient support are totally different. They always required support to be provided immediately after positive diagnostic. The hospitals should take care of their referrals and support should be together with other men. It should always be self-organized and a no women should participate. The events should be of community of interest rather than focus on diseases.
A major highlight on the lives of ethnic minority cancer patient was also discussed, and Denmark has 11% of the total population falling to this group which are mostly from other countries. Cancer is stigmatized in this group mainly due to low knowledge in their society and also on cancer. Each individuals and community are unique, hence awareness programs should be identified which works well for each group. Increasing the knowledge of caner and patient support services are the best two approaches to handle the inequality in the cancer survival.
In the second session “Culture is Healing: Improving survivorship for Aboriginal and Torres Strait Islanders” by speaker Danielle talked about her 2017 Think Tank which is 3 year project funded by Cancer Australia especially for the breast cancer survivors. Through this project they were able to improve the survivorship experience and them coming out to support the similar group. Increased community awareness around were the best practices which can improve the survivorship care. The Possum Skin Cloak emphasised the culture healing among the indigenous groups. The survivors with these groups are trained and helped to overcome economically within their community. These trained survivors later are asked help their fellow mates on propagate awareness on breast care and support other survivors.
The final session was concluded by putting stress on how we could save the refugee groups from vulnerable diseases like cancer. Speaker Omar in his session “Caring for Displaced persons and refugees-Jordanian perspective” stressed that it was a global burden to provide care for around 68.5 million people who were forcibly displaced worldwide by conflict. He also said that around 58% of global refugee population live in urban areas, not in camps or rural area. The main challenges for refugees and IDP are safety and protection. Access to shelter, food and basic services are most of them are from poor economics. Lack of proper medical support and exposure to violence, abuse and exploitation also affect their mental health and they need a psychosocial support. Syrian crisis paved way to the health situation getting deteriorated and people being at risk especially girls and women since they had poor access to essential reproductive health. The numbers on war injuries were high with 30% going with permanent disability. The open door policy of Jordan helped around 629000 Syrians to get them registered and around 84% live in host communities. He speaker also stressed that there were delay in health services for the refugees and delay in diagnosis of cancer. The government had funding issues in getting them provide with enough health support. But various Jordon organizations have come out to support such refugees group. Since cancer cases are increasing as each year goes by, it’s necessary to support such groups. Currently they have trained more than 1000 professionals who would be able support the refugees group and guide them. Speaker Omar termed this as “An extra hand should be given to people who need the extra one”. Palliative care is most important which needs a lot of psychosocial support for the patient. They with the help of trained professionals are supporting the home based palliative care.
During the discussion time the audience was happy hearing about the navigator programme and discussed more about how one get selected to the group. The Home base palliative care was welcomed by many in the group. Support to refugees were areas which many have untouched and they look forward to collaborate to make sure the refugees health was also taken care. Our experts from the panel opined that it would be great to have various pathways to cater to the need for the cancer patients as the need vary from person to person. The team suggested that it would be great to have potential partners partnering with various cancer centres that can assist and properly guide them during the treatment period. With a proper roadmap to partner teams who can handle these areas would be the greatest achievement. The discussion was heart touching as each of them spoke from their experience of how a support both mentally and financially can bring back a cancer patient to normal life.
Article contributed by Sindhu, Chendurpandian