Hello, Gulnara, and thank-you for speaking to us today. 

I'll start by asking you, what is your job title?

I’m the director of the social fund: ‘Together against cancer’ which was established in 2008 by doctors and oncologists in Almaty. 

And how did you get into palliative care?

I joined the foundation in 2010. Before that I was in a totally different area, in oil and gas. Before 2010 I wasn’t connected with oncology or palliative care at all, but I was involved in many social and charity projects. 

The founders of Together Against Cancer understood that doctors alone do not have enough power and resources to fight against the disease that takes away over 17,000 lives each year. Besides, being state workers, doctors are often uncomfortable in speaking out their views. 

Only in collaboration with the patients, civil society, business and policy makers, measures can be worked out and taken to significantly improve prevention and treatment of oncologic diseases in the country. 

So the founders wanted me to use my leadership and management skills to reach out to the government and parliament and to unite all the various levels of Kazakhstan society to get public and government attention to the issues of oncology and palliative care in Kazakhstan. 

Last year, the fund started to focus on palliative care. Thanks to the Soros foundation and some people (NGOs and medical specialists) in Kazakhstan who are willing to develop this kind of care in the country, a number of seminars, round tables and conferences were conducted. As one of the outcomes of such activity, the National Standards of Palliative Care– based on the best world practice– will be introduced this year in Kazakhstan.

During 2012, our Fund has conducted several activities including the round table and conference. Members of the fund have also participated in seminars.  For instance, in November, the 'Train a Trainer' seminar by the End of Life Nursing Education Consortium (ELNEC) was organized by the Soros Foundation–Kazakhstan, the International Palliative Care Initiative, Open Society Foundation, with the purpose of training staff and developing skills in palliative care. 

The seminar was attended by teachers of nursing courses, employees of Kazakhstan hospices, nursing professionals and leaders in the field of education. The seminar was conducted by foreign experts: Karma Erickson-Hurt (USA), Irina Tiurin (Romania) and Marian Grant (USA). 

The course was dedicated to the problems of communication between doctors, patients and families; assessment and management of pain and symptoms; psychological and spiritual aspects of palliative care; the role of nurses as members of the multidisciplinary team; educational resources for palliative care; and the latest information on palliative care at the international and country levels.

The Fund coordinated various awareness-raising campaigns, such as a flash mob and an information campaign, in addition to the participation by members of the Fund in seminars and conferences.

A flash mob is a very interesting way to raise awareness. Can you tell me more about it?

In fact, I would rather refer to it as a smart mob. A smart mob is a group that, contrary to the usual connotations of a mob, behaves intelligently or efficiently because of its exponentially increasing network links, enabling people to connect to information and others, allowing a form of social coordination (Wikipedia).

The Fund won a very competitive grant for NGOs in Kazakhstan from the Soros-Kazakhstan Foundation, and if I can say so, we did the best with the money that they gave us. Our ideas were new and I don’t think that anyone in the world has done this before for palliative care. 

On World Hospice and Palliative Care Day, 13 October 2012, we picked out several of the most busy places in the city, for instance in a busy shopping mall, to stage our smart mob. 

The purpose of the project was to raise awareness around the issue of care for patients in the last stages of cancer. 

Imagine this: in the middle of Saturday's street bustle ‘a man of the crowd’ suddenly falls to the ground losing strength, looking for help. Some dark force covers its cloak around the exhausted man and declares the fatal diagnosis. 

Soon, people begin to realize that this is a part of a musical performance in which the ‘patient’ is joined by other members whose roles are printed on their T-shirts: DOCTOR, NURSE, PSYCHOLOGIST, SOCIAL WORKER, FAMILY, FRIEND, VOLUNTEER and SPIRITUAL MINISTER. 

In an emotional dance, the artists show the essence of the multi-disciplinary team of palliative care: well-coordinated interaction of medical and non-medical professionals and a family in order to improve the patient's quality of life. 

In the end of the performance the group release huge balloons in the sky, symbolizing pain, fear, despair, depression and loneliness. 

We were assisted by groups of dance students from different universities. I gave them the theme, and then they choreographed the dance sequences themselves.

People reacted like they didn't understand at first and they were kind of only attracted by the music. Then when they understood what it was all about they started to react very emotionally. 

Were there hospice and palliative care staff on hand to answer any questions that the public might have?

Yes, we had a team of doctors from the oncology centre. After the performances, oncologists explained to the audience the role of palliative and hospice care, talked about the contribution each of us could make to the development of this important service, handed out leaflets in Kazakh and Russian languages and balloons with the logo of World Hospice and Palliative Care Day.

Also, people asked questions and the doctors answered them.

We had little postcards in the shape of butterflies and printed in the colours of Together against Cancer. Everyone could write something–words of support– to those who are now in the oncology centre, to the patients. We had about 500-600 of these butterflies by the end of the day. 

There are so few hospices in Kazakhstan. It is not a common notion. So most of the people don’t know what hospice is or what palliative care is.

We filmed the smart mob and we are using this video in our events devoted to palliative care. It is a very universal thing. We can use it anywhere. It is a very quick way to make people understand about palliative care. 

Thank-you for taking the time to speak to us, and I wish you all the best with developing palliative care awareness in Kazakhstan.