Lithuanian Cancer Patient Coalition (POLA)
Lithuanian Cancer Patient Coalition - POLA (Pagalbos onkologiniams ligoniams asociacija
in Lithuanian) is an umbrella non-governmental organisation, representing other non-governmental organisations, working within the cancer field in the Republic of Lithuania. It was established in 2012.
POLA is dedicated to representing the interests of cancer patients / carer’s in the decision-making process, aiming to improve cancer patients’ quality of life via promoting their interests in front of competent authorities, raising awareness about cancer issues among general public via educational and informational tools.
Currently POLA has 15 members, majority of which are cancer patient organisations and the remaining members are the foundations / trusts / social organisations working in the cancer field.
POLA Board consists of 7 individuals:
- 3 cancer patients,
- 2 cancer patient caregivers,
- 1 oncopsychologist,
- 1 palliative care professor.
The Board members are performing all activities on pro bono basis.
POLA is a full member of European Cancer Patient Coalition (ECPC).
Key values of POLA:
. POLA is governed by the board, elected by the member organisations, consisting of 7 members, who contribute on a pro bono basis (majority of board members are cancer patients’ or relatives of cancer patients). The board is elected for 3 years period and the same member of the board can be re-elected only once.
. POLA statutes, activity reports and financial statements are publicly available and could be accessed via the following link: www.pola.lt/apie_mus/veiklos-ataskaita/2534-2/
. Board members, President, Director, Project managers and volunteers are dedicating their time and competences on a pro bono basis, without expecting a financial remuneration. All the finances that are fundraised are used to generate maximum impact for cancer patients and are limited to covering hard costs and not the costs of human resources.2014
In 2014 POLA is determined to launch an Education and Capacity Building Project for Patients, where participants will receive a basic training on (i) the functioning of the health care system, (ii) concept of innovative / generic and biological / bio-similar medicinal products, (iii) voluntarism, (iv) onco-psychology, (v) concept of clinical trials, (vi) patients’ rights and obligations, etc.
Due to absence of CRC activists, no activities were carried out in relation to European Colorectal Cancer Awareness Month, but POLA will strive to either encourage the establishment of CRC patient organisation in Lithuania or will itself become pro-active advocate of CRC issues in Lithuania.POLA political activities:
1. Being active and visible on political level. POLA President is the member of Advisory Board of the Ministry of Health, formal commission, delivering guidance on the strategic goals and development directions of Lithuanian Ministry of Health. Also POLA President is the member of Committee on the Reimbursable Medicines and Medical Devices, and a Deputy-Chairman on the Commission Awarding Damages for Patients related to Medical Mal-Practice.
2. Fostering patient involvement in the decision making process through participation in governmental committees / working groups. Currently 4 Board members are experts in 14 working groups.
3. Providing competent authorities with action plans. POLA has participated in the drafting of National Cancer Plan for 2013-2020 (not published yet). POLA provided input in detailing over 20 measures, addressing the needs of cancer patients and their relatives, and will continuously engage in the review of suggestions provided by the working group members. This is the first time patient representatives were invited to contribute to the drafting of a high-level legal document that will be approved by the Government of the Republic of Lithuania.
4. Organising press events, giving interviews / comments in mass media on strategic matters of the healthcare system (in 2013 – over 30 public appearances in mass media).
1. The POLA Card project was launched. The card is free for all cancer patient sand it gives him/her the opportunity to get discounts from POLA partners (private health care institutions, rehabilitation centres, pharmacies, etc.). One of the main partners of POLA Card project is Lithuanian Ministry of Culture. This gives card holders free entrance to Theatres, Concert halls, Cultural events, etc.
2. Fostering establishment and informational support for Cancer Information Centres.
3. Improving quality of Palliative Care in Lithuania. From 2013 onwards POLA has initiated establishment of Hospice Support Fund.
4. Publication projects in partnership with The Tiltas Trust, Macmillan Cancer Support and Cancer Research UK.
5. In 2013 in partnership with one of the biggest news portal www.lrytas.lt POLA initiated the Cancer Awareness Campaign “Cancer is not death verdict”, where over 60 articles on cancer-related issues have been published. In December 2013 POLA has followed-up the campaign with National Health Exam (in the form of online survey), where over 2000 people have participated.
6. In 2013 the Effective Communication Training Program was implemented for oncologists and other specialists working in oncology sector. Training programmes are still being continued in 2014.