#BRINGUSCLOSER ON MULTIPLE SCLEROSIS WEEK
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. The mission of the association is to provide access to innovative information, educate all stakeholders regarding the needs of people with neurodegenerative disorders and to improve/facilitate equal access to high-quality treatment and therapies in order to improve the quality of life. APAN Romania wishes to become the main voice of the individuals with neurodegenerative diseases in Romania and to ensure that the patients have a strong voice inserting their own goals and priorities.
There are 700.000 people diagnosed with multiple sclerosis in Europe out of which 4000 live in Romania and are part of a national treatment scheme covered by the Ministry of Health. Estimations of undiagnosed or misdiagnosed patients reach 10.000. Multiple sclerosis is a chronic (life-long) disease that affects the central nervous system, including the brain, spinal cord and optic nerves. MS is most commonly diagnosed between the ages of 20 and 40, with the average age of onset 34 years of age. MS affects twice as many women than men. The disease is highly unpredictable and no two patients’ symptoms are the same. While some patients may be mildly affected, in other people the condition may progress more rapidly to different levels of disability. Common MS symptoms include blurred vision, extreme fatigue, pain, spasms, numbness in legs and hands, loss of movement and speech problems.
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 (injection or oral) and this is an uncomfortable situation for both patients and medical staff (not to mention the time, expenses or efforts involved in moving patients from all over the country to these centers). There are solutions to increase the number of centers in Romania through a review of the accreditation criteria and change in the system, but the situation is delayed at the Ministry of Health.
RESEARCH & PLANNING
- Reference studies in multiple sclerosis research, both national and international
- Official data provided by Romanian Neurology Society
- Media audit concerning multiple sclerosis neurodegenerative diseases
- Qualitative research – focus groups group with neurologists and family doctors
- PLANNING: The whole awareness campaign for Multiple Sclerosis 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 campaign was a team effort initiated by APAN, with a creative add-on from volunteers from 8 hours overtime for a good cause event, organized by the Bucharest Community Foundation and deployed by the The Public Advisors. The missing piece was the funding (aprox. 5000 Euro) which APAN obtained partially from two pharmaceutical companies: Merck Romania and Roche Romania. The rest of the activities were conducted pro bono by volunteers, members of the association and by the PR Agency.
- OBJECTIVES OF THE CAMPAIGN: 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. What they really need is care, both medical and non-medical.
- TARGET: general public, Romanian authorities, medical representatives, patients and caregivers, media.
To Romanian authorities: SM patients need more treatment centres and access to new therapies.
To medical representatives (doctors): appreciation for the efforts for being superheroes, caring each of them for a large number of patients. Acknowledgement of the fact that they represent agents of change, they can also help to solve some of the difficulties of MS patients.
To patients and caregivers: APAN accompanies them in their struggle for their rights to receiving the best treatment.
To media: you can help APAN solve some of the difficulties of MS patients by delivering information and messages of the campaigns initiated by the association to all the other categories listed above
- COMMUNICATION CHANNELS:
The communication channels used: public events, debates with the authorities, events for medical representatives, classic media channels: online, print, radio, tv, social media channels: Facebook pages of APAN and of its members, direct communication: newsletters and leaflets.
- COMMUNICATION VEHICLES:
We created a fully immersive and sensorial experience that shines a light on the realities of life with this disease: The MS House. Its purpose was to mobilize general public to better understand MS patients, their families and caregivers. The MS House had a living room, a kitchen, a study room and a bathroom. All rooms had special elements to make a normal person to experience. The living room: A TV displaying half-definition pictures is used to illustrate vision problems. An armchair that’s set very low to the floor demonstrates the difficulty of getting up from a chair due to leg strength issues and fatigue. A sign explains that MS fatigue is like sitting down, and you’re so tired that you can’t get up again. An inflatable mattress is on the floor to simulate how someone with MS has difficulty balancing while walking and may be very wobbly. The kitchen: A heavy coffee mug and an unbalanced tray are used to demonstrate fatigue symptoms.
The study room: A “jumbled” computer keyboard simulates how cognitive problems may make it difficult to find the correct word to use when typing. Ankle weights appear under a sign that says “Don’t drag your feet,” and then describes how people with MS can feel as if they are walking through sand. The bathroom: An infrared heater and a blurry mirror are used to simulate how a hot shower or weather can flare MS symptoms. In its other stages of the #BringUsCloser campaign we also created other communication vehicles: special post cards with “messages from the past” from experienced patients to newly diagnosed ones, coffee cups and Thanks, Doc! balloons for doctors, pamphlets on the disease for patients, caregivers and general public, press releases, newsletters, invites, spiders and roll-ups.
STAGES and directions: The campaign was developed on 4 pillars:
- 1. 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 pamphlets with information about the disease and ways they can show their support.
- 2. Thank you, doc! – was the pillar of #BringUsCloser campaign addressed to all medical staff that treats day by day 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!’ etc.) and distributed pamphlets to other visitors. Thanksgiving was addressed to neurologists, residents and nurses involved in MS centers from Bucharest. MS patients (members of APAN Romania), family members and volunteers from Oracle (a multinational company that showed its support) acted as messengers of the campaign run 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.
- 3. #BringUsCloser Time Capsule – was the pillar of the campaign 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. That person was usually frightened, unsecure, psychologically broke down and in need for support. 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.
- 4. Romanian authorities and patient association public debate: On the 30th of May 2018 (World MS Day) APAN Romania staff 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. The authorities have the power to initiate or modify existing laws that could grant patients’ access to more treatment centres and to new therapies. 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).
AWARENESS, INFORMATION AND EDUCATION CAMPAIGN RESULTS
15 news on national TV
ProTV, Antena 1, Antena 3, Digi, 24, România TV, 35 minutes;
13 radio coverages
including the national mainstream stations: Europa FM, Radio România Actualități, București FM, Kiss FM, Magic FM, Radio ZU, Virgin Radio – 20 minutes;
Articles published on the main national newspapers (online edition)
Adevărul, Evenimentul Zilei, Wall Street, Gândul, Libertatea, Hotnews, Jurnalul, DCNews, Times New Roman ș.a
CREATIVITY AND INNOVATION
The creative component of the campaign consisted of finding a way of communicating a serious medical message through direct interaction with our targeted audience, and get its attention. So we turned places where our audience use to spend most of the time into effective communication channels – we started with a partnership with the Professional Football League and continued with cinematic activations, gaming events and office buildings.
By using unconventional tactics as turning the self evaluation test into a virtual game we were able to give a friendly approach to a medical issue and encouraged our target to be more open about it.