In Finland, there are almost a million patients suffering from pain, and 300 000 of them suffer from difficult or disabling pain. Kipukapina ry (‘Pain Rebellion’) was founded on 6 November 2019 to strengthen the voice of the patients in the health care sector. The organisation spreads information about chronic pain, pain management and patients’ rights.
‒ The objective of the organisation is to offer everyone suffering from difficult chronic pain the appropriate care that aims at relieving pain and giving better tools at coping in everyday life, explains the chairperson of the organisation, psychologist Sirpa Tahko.
According to Tahko, many of the pain patients live in agony and are uninformed about the help they could receive. Those who have been left without care or mistreated find it difficult to connect with other people in the same situation. Even the authorities are not able to provide up-to-date information about the treatment aimed at pain patients.
Tahko has been listening to chronic pain patients for about 15 years in different roles, and she also suffers from chronic pain herself. She has written columns to Potilaan Lääkärilehti (‘Patient’s Medical Journal’) about the life and situation of pain patients and been contacted multiple times by the patients. To raise more awareness of the issue, 18 months ago, Tahko set up a Facebook page called Kipukapina (‘Pain Rebellion’). The page and other Kipukapina social media pages have already almost 17 000 followers in total. In addition to this, the patient organisation offers pain patients peer support in groups that gather in over 20 municipalities all around Finland.
‒ By far, we have provided paint patients support persons and, for example, tangible support with their numerous reclamations and complaints. To support pain patients, we have set up helplines and chats that are maintained by health care and social work professionals. We organise lectures and courses on pain, pain management and patient rights. We will also start organising Finland’s first experts by experience training focusing on pain.
The work of Kipukapina ry has solely based on the valuable work done by volunteers.
‒ We have also been in touch with health care districts and demanded consistent and compassionate practices. We have met with members of Parliament and consulted the director of the Human Rights Centre (HRC) and the lawyers of the health services of the Office of the Parliamentary Ombudsman. We have visited the Ministry of Social Affairs and Health to talk about the situation of pain patients in Finland, continues Tahko.
‒ In addition, we are involved in the project ‘Potilaat mukaan’ (‘Patients involved’) funded by the Funding Centre for Social Welfare and Health Organisations (STEA). The project is a joint effort of The Finnish Medical Society Duodecim and different patient organisations. The Current Care Guidelines on pain will be reformed in 2021–2022. We represent pain patients in this guideline and in other Current Care Guidelines where pain management is part of treating an illness. We also work closely with the Finnish Medicines Agency Fimea to promote safe pharmacological treatment.
Right to appropriate pain relief
Pain patients have the right for individual care that is tailored for them. However, there are too few doctors specialised in pain management, and access to care varies drastically between different regions. Also, the guidelines are not always available, and the health care supply chain and education are inadequate. Especially, the availability of non-drug methods of pain management is non-existent at times, and the know-how of professionals is not consistent. Kipukapina has also witnessed extreme methods that can be compared to alternative new-age practices relying on pseudoscience.
‒ In pharmacological treatment, pain patients may have been compared to patients with drug addiction and to people who misuse drugs. In some cases, patients have been treated in a rigid way, and dialogue between different treatment providers has been insufficient. For example, a patient may have been denied medications by a treatment provider following unofficial guidelines even if the medications in question have been proven efficient by another long-term and professional care provider. According to the experiences of pain patients, patient equality and individual care needs are not always considered.
In addition to strengthening the voice of pain patients, Kipukapina provides perspectives to public discussion.
– We want to shed light on the importance of interacting with patients from the point of view of professionals working with pain patients, emphasises Tahko.
Text: Tiina Saario-Kuikko
Read more about Kipukapina in Finnish on www.kipukapina.fi, www.facebook.com/kipukapina, @kipukapina (Twitter) and #kipukapina (Instagram).
More information about Kipukapina ry: Chairperson and Psychologist Sirpa Tahko, p. 045 122 5468 or firstname.lastname@example.org.
Translator: Eve Lahikainen