ORGANIZATION: The Association of Patients with Neurodegenerative Conditions (APAN Romania) represents the community offering the opportunity to all individuals affected by neurodegenerative diseases to live their lives to the highest potential and providing the assistance they need until a treatment shall be finally found. APAN Romania represents and defends the rights of individuals with neurodegenerative diseases in Romania. APAN Romania wishes to become the main voice of the individuals with neurodegenerative diseases in Romania.
CONTEXT: 4,000 people in Romania are diagnosed with multiple sclerosis, and are part of a national treatment scheme covered by the Ministry of Health. In Romania, there are only 12 MS Centers, usually located in emergency hospitals, inappropriate for chronic patients. The current organization of the Romanian health system is deficient as number of staff, resources or bad organization. All centers have become super-crowded (getting the monthly treatment from the hospitals means 700 or even 900 patients per center per month, only for home treatment.
PLANNING: The awareness campaign lasted for a week beginning with 30th of May 2018 (World MS Day) and aimed to bring us closer: physicians, patients, authorities and the general public. The objective of the campaign was to create awareness about the need that all stakeholders should work together, in order to increase the quality of life for multiple sclerosis patients. The target of the campaign was the general public, Romanian authorities, medical representatives, patients and caregivers, media. MESSAGES: information about multiple sclerosis, MS patients need to be accepted and integrated in everyday life; SM patients need more treatment centres and access to new therapies; appreciation for the efforts for being superheroes, caring each of them for a large number of patients; APAN accompanies them in their struggle for their rights to receiving the best treatment.
STAGES and directions: The campaign was developed on 4 pillars:
- The first step of the #BringUsCloser campaign was the deployment of the MS Sensorial House in a high traffic area (one of the main shopping malls of Bucharest) during the whole MS week (28th of May -3rd of June 3). Interacting with the house, healthy people experienced the most common symptoms of people with SM: muscle stiffness and fatigue, difficulty in daily tasks, mobility and balance, urinary incontinence, cognitive difficulties, loneliness and anxiety. Visitors of the house also received leaflets with information about the disease and ways they can show their support.
- Thank you, doc! – was the pillar of #BringUsCloser campaign addressed to all medical staff that treats MS patients. On the morning of May the 30th, balloon installations forming the phrase TKS, DOC! were placed in the main lobby of MS medical treatment centers. Volunteers offered coffee cups with thankful messages to the medical staff (‘My brain is on good hands’, ‘A good heart cures thousands of brains’, ‘Brains headquarter’, ‘#MS Super hero’, ‘You are my future!’) and distributed leaflets to other visitors. Thanksgiving was addressed to neurologists, residents and nurses involved in MS centers from Bucharest, at the same time in seven medical centers: SUUBucuresti, SUUElias, SUUMC Carol Davila, Colentina Clinic Hospital, Agrippa Ionescu SCU, Fundeni Clinical Institute, SCP Alexandru Obregia.
- #BringUsCloser Time Capsule – was addressed to newly diagnosed patients and their caregivers. The campaign was deployed on social media and consists in a series of postcards with encouragement messages written by experienced patients. These people undertook a guided-imagery exercise to go back in time in the period they were first diagnosed and had to address an encouragement message based on everything that they know today to the person they were in the past. These messages should reach newly diagnosed patients of today and show them a positive perspective of the future that they may not envision in the present.
- Romanian authorities and patient association public debate: On the 30th of May 2018, APAN Romania also participated in the public debate held at the Romanian Parliament with the theme: “Reshaping treatment in Multiple Sclerosis disease”. With this occasion APAN transmitted the message the #BringUsCloser message to the authorities. The message was that MS patients and the authorities need to act as partners, as teammates. Among the attendees were deputies, members in the Public Health Commission of the Senate and of Health and Family Commission of The Chamber of Deputies, representatives of SNR (Romanian Neurology Society), members of ANMDM (National Agency for Medicines and Medical Devices), and members of CNAS (National Health Insurance House).
This campaign was implemented with the help of Merck Romania and Roche Romania, The Public Advisors agency, 8 hours overtime volunteers, volunteers from Oracle, volunteers from APAN Romania.