After a crowded and long bus journey we arrived in Kandy late last night where we were welcomed by the wonderful and bubbly Mr. Naleef, who is kindly accommodating us in his holiday home outside of town.
We started early and headed to the Kandy Cancer Society to meet with Mr. Samarakoon and discuss what training we may be able to provide to those working at the Cancer Treatment Unit of the Kandy General Hospital. The unit has four wards, two male and two female, and can accommodate up to 60 patients. With only three other cancer units in Sri Lanka, the wards are over-crowded; over 4000 people come from all parts of the country each year for treatment. There are currently no child wards available and so three beds are used to accommodate children within the female wards. Much of the equipment is in disrepair and the demand for treatment far exceeds the available resources.
The centre receives little government funding, instead relying on donations and its own fund-raising. Many of the staff are volunteers. The Society is currently engaged in a huge fund-raising campaign; they are attempting to raise US$6 million in order to build a 10-storey facility with start of the art and functioning equipment, inpatient and outpatient facilities and dedicated women’s and children’s wards. They hope to complete the project within the next two years. You can find out more about this here: http://www.cancerfundkandy.org
Patients receive medical treatment and are also able to engage in endeavours such as games, music and religious/spiritual activities. In addition, a team of approximately 20 counsellors are available to all patients to provide emotional support and advice. Three private rooms are available for counselling within the grounds of the unit. All counsellors are volunteers. We were fortunate to meet two of the most senior counsellors, Marina and Thayalam, two remarkable women who told us of the challenges they face in their roles as well as the primary difficulties their clients present with.
Firstly, their team provide more than just a counselling service. With doctors and nurses often busy with their clinical work, the counsellors often find themselves responsible for providing information regarding the clients’ diagnosis, prognosis and treatment. This has its challenges as the counsellors are often unable to answer such questions or have to find time to speak with the medical team in order to do so. In addition, the counsellors are often involved in assisting with practical issues; we were moved to hear of how they have liaised with a female patient, a seamstress, in order to make fabric prostheses for women undergoing mastectomies as there was previously no alternative.
Secondly, the difficulties clients present with are varied and the counsellors do not always feel that they have the skills to address them. They told us that common problems include: social stigma and exclusion as a result of having a cancer diagnosis; guilt and shame over developing cancer (in accordance with many religious beliefs patients feel that they are being punished for previous sins they have committed); difficulties adjusting to the cancer diagnosis; helplessness about the future often leading to depression and/or suicidal behaviours; anxiety over the future and the well-being of dependants (particularly in relation to loss of income or the death/absence of a parent); anxiety and low mood as a result of being separated from loved ones; and difficulties in sexual functioning as a direct result of the cancer, often leading to relationship difficulties. Related to these problems were wider issues regarding gender roles; cancer can disrupt the more traditional positions of men and women within Sri Lankan culture, leading to problems in relationships. We were impressed to learn that in many cases the counsellors invite partners and family members to meet with them in order to address these more systemic concerns.
The counsellors told us that they often find it hard to get their clients to open up and would therefore appreciate some training in basic clinical skills. They were also interested in hearing about how we might talk about sex with clients as this remains a significant taboo in Sri Lanka. Currently they get some training from other medical professionals, however there are many areas in which they still feel de-skilled. We have agreed to provide two half-day workshops at the end of January and hope we can built the team’s expertise and confidence, as well as reflect how well-developed their skills are and what a tremendous amount of support they are providing to clients who might otherwise have no one to turn to. Indeed, it has been quite shocking to see how stigmatised cancer is in Sri Lanka and how little support is available to clients compared with the huge amount of resources available to those living with cancer in the UK.
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