Patient organizations to improve help to communities
Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities.
Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD
Yan V. Vlasov – MD, Mikhail Al. Kurapov, Mikhail V. Churakov – PhD. Patient voluntary organizations’ role in improving the quality of rendering social and medical assistance to communities.
Organized patient communities (spearheads, voluntary organizations) can be very important in rendering assistance to people with various diseases. In this context, the experience of the All-Russian Public Organization of Disabled People with Multiple Sclerosis (or, All-Russian MS Society – ARMSS) is exemplary. Multiple Sclerosis is a severe chronic disabling disease, from which over 150,000 patients suffer in Russia. This article has endeavored to analyze the performance of the ARMSS over the past ten years and described the major trends of its activities, working methods and achievements. ARMSS’ successful practices have been emphasized: co-organization of patients, activating and combining efforts and resources of social partners to support people with MS, encouraging the social rehabilitation and adaptation of patients, participation in making and implementing the state policy to protect people with MS.
Keywords: voluntary patient organizations, rehabilitation, rehabilitation techniques, multiple sclerosis, protection of the rights of patients, the All-Russian MS Society (ARMSS), Public Council to protect rights of patients.
Hundreds of voluntary organizations are at work in the Russian Federation that incorporate people with different diseases and aim to improve the medical and social assistance to patients and, in the end, to improve the quality of life of patients and their families. Under certain circumstances, voluntary organizations are able to play a key role in many spheres of activities seeking to improve the conditions of life of patients: to help collaboration with authorities, to create fields of communication to provide patients and medical and social professionals with objective information, to arrange for effective rehabilitation measures.
The aim of this article is to assess the role of patient voluntary organizations to improve the quality of rendering medical and social assistance to communities as the example of the ARMSS holds, to analyze the performance of this organization over the past ten years. It also aims to describe trends of the organization activities and if it is possible to employ ARMSS’ methods and successful practices in the work of other voluntary organizations.
Multiple Sclerosis (MS) is a severe chronic disease of the brain and spinal cord, which affects relatively young people and oftentimes results in disabilities. Over recent years, MS has tended to rapidly grow in frequency with onset among younger patients. This was caused by not only better diagnostic facilities for MS but also improvement of the quality of epidemiological research, yet the actual growth of the disease is also a reason. Currently, there are over 150,000 patients in Russia, of whom no less than 75% are already disabled. While including the families of patients and disabled people, MS as a problem involves from 750,000 to 1 million Russian citizens. At present, there are about 3 million people with MS in the world. The MS frequency in Russia is from 30 to 100 per 100,000 of general population.
Medical and social support for PwMS is a challenging and complex task, which cannot be resolved otherwise but in close cooperation between civil institutions, as well as expert and public ones. Since the course of the disease is unpredictable with the end deemed practically inevitable, while diagnostic facilities were untimely and pathogenic therapies were highly expensive and disabilities growing, some time ago patients with MS would not often get an adequate medical and social treatment as they were regarded as having no prospects. With introducing a range of medicines in the 90s of the 20th century to modify the course of multiple sclerosis (or, disease modifying drugs - DMDs), then, new medical and rehabilitation techniques, patients got a hope for the pathological process development to slow down, to prolong physical activity and working ability and quality of life.
However, MS requires overall significant resources employed being financial, organizational, scientific-methodic, social. In the 90s of the last century, the problem remained little-known and was considered by professionals as a specific scientific-medical one. For a long time, authorities and professional and general communities underestimated its high social significance and the necessity to concentrate on considerable efforts to fight it.
Under the circumstances, grassroots spearheads in Russian regions started establishing MS voluntary organizations. In 1992, the Petersburg public organization ‘North-West MS Association’ was registered, in 1995 – the Moscow MS society, in 1996 – the Samara regional public organization of disabled people with MS. By 2001, the number of such organizations reached 14. The organizations were established by patients, their families and medical professionals, who were the first to realize how socially dangerous the disease was. So, the initiative to co-organize patients in order to protect their civil rights was coming upward from rank-and-file members who were directly involved and understood its significance in their experience.
To render comprehensive assistance and support to disabled people with MS and other demyelinating diseases, to socially adapt them in the society, to protect the rights and legitimate interests of this group of people and their families, the All-Russian public organization of disabled people with multiple sclerosis (All-Russian Multiple Sclerosis Society – ARMSS) was established in 2001.
The major declared objectives of the Organization are:
- To improve the quality of medical and social assistance to people affected by MS.
- To ensure the legal safety of PwMS and their families through development of the legislation and organizing control to ensure it is observed by authorities and profile institutions.
- To arrange for cooperation with companies i.e. producers to speed up making and deliveries of high-efficiency medicines, medical equipment and rehabilitation facilities.
- To help train medical profession personnel on MS.
- To build up a positive attitude among the public and to raise their awareness about MS issues and how to resolve them.
- To activate and consolidate efforts of social partners to achieve in dealing with MS.
As of today, the ARMSS structure is composed of two major sectors: volunteering and professional. All units comprised are reflected in picture 1.
Regional and town nongovernmental MS organizations are rendering the expert control over the quality of medical and social assistance on the regional level; these have been set up in 47 Russian regions.
Within the bilateral cooperation agreement with the Federal Service on Surveillance in Healthcare and Social Development in the Russian Federation (RF Roszdravnadzor), in 2007 the Institute of Plenipotentiary Public Experts was established, which is now at work in 75 regions of Russia. This structure is currently the most efficient tool to collect comprehensive information about MS, to carry out public control if legislated rights of patients are observed and to resolve issues related to MS in regions.
Image 1. ARMSS Structure.
Nurse assistance services have been set up in 55 regions that carry out target medical maintenance of patients receiving highly expensive medicinal therapy. Nurses render consulting medical and social assistance to people with MS.
The ARMSS’ most significant achievement was the actualization of MS as a problem and helping communities to see its significance. The most outstanding result of this understanding became the guaranteed provision of highly expensive medicines (DMDs) for patients with MS at the expense of federal and regional budgets, which had been unthinkable of in the early 2000s.
Since 2005, DMDs were incorporated in the Additional Pharmaceutical Support (APS) programme, while starting 2008 they entered the programme of the seven nosologies requiring heavy money spending. It should be mentioned that in 2000 about 2,300 patients were on MS pathogenic therapy in the Russian Federation: among them, there were no more than 1,500 to get drugs covered by the federal budget, while the others had medicines within pacebo-controlled clinical trials. By 2011, over 18,000 people would get DMD provision, that is, excluding those involved in new drugs trials. Mention should be made of the fact that some 30,000 patients are estimated to require DMD therapy in Russia. Image 2 demonstrates the dynamics of providing people with MS with highly expensive DMD therapy.
The ARMSS is actively cooperating with medical and scientific institutions while ensuring patients’ rights are observed at clinical trials and also providing people with MS with information about new therapeutic methods and clinical trials for new medicines conducted. There is an urge to say that, while in 2000 there were just 4 scientific investigations in MS conducted in Russia, currently over 60 such investigations are conducted in our country.
Image 2. DMDs required and provided.
The ARMSS took an active part in the development and implementation of the concept of the MS rehabilitation process, which consists of the areas as follows:
1. Psychosocial rehabilitation
2. Social and medical rehabilitation
3. Social and everyday life rehabilitation
4. Occupational rehabilitation
5. Civil rehabilitation
Psychosocial rehabilitation includes the following techniques: Person oriented psychology, group psychotherapy, psychological testing for families with special tools to assess behaviors and relations, family psychotherapy with a therapeutic tool tailored to a person for a full family (i.e., with both parents and children) having the husband with MS or the wife with MS, tailored techniques for broken families, for singles, consultations of a sexuality doctor to improve the condition as appropriate. Within the frames of psychosocial rehabilitation, regional branches of the ARMSS are staffed with medical and social psychologists, psychotherapists, who run consultations for PwMS in medical institutions, facilities based on the regional MS organization, and domestically. The ARMSS actively cooperates with the agency ‘Family Service’ and other state-run establishments.
Social and medical rehabilitation includes the next areas: Physio-rehabilitation services (kinesiotherapy, physio-therapeutic interventions, therapeutic interventions by means of dealing with animals – for instance, hippotherapy), drug treatment and monitoring systems to assess the quality performance of functional systems (body coordination, muscles strength, walking ability, etc.). Objectives of nonprofits are to ensure the accessibility of social and medical rehabilitation assistance to patients, arrangements for cooperation between medical, scientific and government agencies to introduce new rehabilitation techniques.
Social and everyday life rehabilitation includes the next areas: Everyday life services in package (e.g. of a barber/hairdresser, manicurist and chiropodist, cosmetologist, dentist, trichologist, make-up designer, osteopath-vertebralist), teaching of skills to use rehabilitation means, teaching of skills of self-maintenance. Since the social and everyday life rehabilitation aims at involving a person with MS as much as possible in socially active life, to implement it requires a range of activities: to inform the patient about available social and everyday life services, to provide him/her with essential knowledge and to teach skills to compensate for gone functions and to re-adapt to new realities of life, to ensure patients have rehabilitation devices, to promote barrier-free environment principles, to promote leisure rehabilitation.
Occupational and civil rehabilitation includes learning work skills, consulting by professionals of employment services, legal assistance, workshops on legal basic issues, ‘vacancy fairs’.
According to domestic statistics, up to 82% of people with MS have to leave their jobs, which reveals the vast social significance of the problem.
The ARMSS lays stress upon occupational rehabilitation of people with MS, because retaining one’s current job or retraining for another job is a vital factor to influence the quality of life of a person, his/her emotional, social and economic status. The ARMSS creates jobs for people with MS in the federal structure (national MS organization) and regional voluntary organizations (its branches). With the ARMSS active participation, there is activity on training and re-training organized for employees. In close collaboration with employment services, people with MS get temporarily employed with a prospect to get a permanent job eventually. Since January 2011, the interactive service of personnel started working; this department, based on filled questionnaires, employs people with MS in other organizations as well as it accumulates business ideas. A crucial point is that now in accordance with the legislation, members of PwMS’ families may officially agree with authorities to care after an MS patient with severe disabilities in the family, who is unable to live independently, as a social job, which is beneficial to the family budget and improves the quality of lives of family members.
To ensure informational support to people with MS, the ARMSS regularly conducts lyceums and schools for patients and their families; so far there have been 257 schools for patients conducted that gathered 6,712 participants. To intervene in the isolation issue of patients with mobility dysfunctions, we have worked much to ensure that barrier-free environment principles govern as the major policy in arranging city streets, constructing municipal buildings and public institutions. Another important step forward in rehabilitating and re-adapting patients with MS was to create the system of social transportation means and social taxi for people with disabilities. Within the frames of leisure rehabilitation, ARMSS branches in close collaboration with volunteering agencies hold social events: workshops, round-tables, sport events, trips, cultural events, competitions of amateur performance and handworks among patients. Partly, these events are held as part of grant activities. Up to this moment, the ARMSS has implemented 46 grant projects worth of 54 million rubles (€1.3 million) that aimed to develop patient movement and improve the quality of life of people affected by MS.
Cooperation with government structures and participation in law-making initiatives.
The ARMSS permanently cooperates with government structures and takes part in law-making initiatives.
The overall work of any patient organization aims at resolving problem issues being important for patients. This requires that the problem should, first, be worded and stated, then, a plan be developed to resolve it, following which a decision should be taken in legislative authorities to be eventually realized by executive authorities and controlled by surveillance bodies. Voluntary organizations can initiate and speed up the above-mentioned processes.
In this respect, the main activity tool of a voluntary organization is to participate in negotiation fields with authorities.
Negotiation field is a means to ensure a contact and a constructive dialogue between voluntary and government structures; it can be used as a means to communicate information to decision making persons quickly and directly, which accelerates proceedings of a decision on socially significant questions to be passed.
Negotiation fields are set up at an authority, a VIP, i.e. leader or MP. There are permanent and temporary negotiation fields. Temporary negotiation fields are: round-tables, consultations, public hearings, meetings, commission and work group sessions.
Basic permanent negotiation fields are: Public Council, Public Chamber, Experts Council, subunits to work with voluntary organizations and media, committees.
Taking a decision at the negotiation field at a VIP or authority makes it possible:
- to get a supporter for an intended project among those who can influence the decision-making process,
- to lessen the number of gates and filters of bureaucracy for a document to go through,
- to improve the quality of a document considering its capabilities to be readily implemented,
- to have the document approved on the part of authorities.
One of the successful negotiation fields now is the Public Council to protect rights of patients at the Federal Service on Surveillance in Healthcare and Social Development (RF Roszdravnadzor), at which the ARMSS is represented.
The aim of the Council activities are: to attract general public and experts to making arrangements to improve safety, to ensure the quality and accessibility of medical assistance to people of the Russian Federation, to develop principles of transparency, lawfulness and professionalism in the social sphere.
The main objectives of the Council are:
1. To coordinate the participation of the civil society in ensuring patients’ rights;
2. To make up propositions for the RF Roszdravnadzor to optimize issue resolving;
3. To discuss draft regulations and propositions to optimize them;
4. To make up proposals to develop the process of dealing with complaints of citizens;
5. To assist in protecting labour and social rights of medical profession;
6. To assist in sharing effective techniques to protect patients’ rights;
7. To fight corruption and other abuses in the health area;
8. To inform target groups on civil rights in healthcare and ways to protect them.
The major activities of the Public Council in the area of protecting patients’ rights at the RF Roszdravnadzor are: to collect information through Committees and Subunits, to process, analyze and communicate the information, to develop recommendations and proposals for the RF Roszdravnadzor, to conduct public and professional events: round-tables, seminars, consultations, conferences; to collect and systematize and analyze complaints from individuals and organizations, to submit requests to authorities and institutions, to work with media.
The Public Council at the RF Roszdravnadzor does monitoring of providing highly expensive medical assistance. So during the first quarter of 2011, one of the activities was the sociological survey “Patients’ assessment of the situation in providing DMDs”, which was held in March 2011 in 35 regions of Russia. So while doing the telephone survey of 735 patients, 59% of respondents assessed the situation of providing DMDs as unstable. The rationale for the discontent (33% of responses to the direct question) was – “fear, uncertainty in the day to come caused by medicines changing”. The survey was done without any external financing but at the expense of the ARMSS resources and the Council, that is, it was the volunteering input from agencies members, technical and organizational resources, involvement in the problem and advanced contacts with patients. At the time of writing this article, two more All-Russian sociological surveys are in preparation.
In analyzing the Public Council activities, it is possible to highlight the following characteristic features that positively describe this structure.
The Council is engaged in involving external resources adding to the government healthcare system, into activities to protect patients’ rights; those are public and experts resources. Actually, the experience over the end of 2010 through the beginning of 2011 demonstrated that the Council while encompassing the Russian Federation altogether with its activities, is well able to function without additional government financing.
A specific feature of the Council is that it builds up a functional vertical of public structures on the basis of the government service. The Council activities note the fact of delegating part of powers to the civil society by the Federal Service.
Besides, the Council builds up a stable and powerful channel of two-way communication between the Federal Service on Surveillance in Healthcare and Social Development with regional agencies, general communities and individual target groups.
Since its inception, the Public Council at the Roszdravnadzor proved to be an effective negotiation field for the government, voluntary structures, patient organizations, professionals in the social sphere and healthcare to collaborate.
Since large-scale nonprofit establishments have far richer capabilities to efficiently pursue their Charter objectives, in 2009 the ARMSS was one of those to initiate the All-Russian Patients Union. Today, 12 big patient organizations are members of the Union. These include: The All-Russian charity public organization of disabled people ‘All-Russian hemophilia society’, the public organization ‘League for protecting patients’, the Interregional public organization ‘Organization for assistance to people with mucoviscidosis’, the Interregional public organization ‘Assistance to people with childhood disability who suffer from Gaucher's disease and their families’, the Interregional public organization of disabled people ‘Society of patients with oncohematologic diseases’, and others.
In May 2010, the Public Council to protect rights of patients at the Roszdravnadzor, the All-Russian Patients Union and lead Russian public establishments of patients held the First All-Russian Congress of patients and patient societies, in the course of which the Declaration of patients rights in Russia was passed.
Introduction of informational technologies (IT) into daily life of patients as a factor to improve quality of life
The ARMSS is an active player in the international MS movement being a member of the European Multiple Sclerosis Platform (EMSP) and the Multiple Sclerosis International Federation (MSIF). An active exchange of experiences is underway on the international level; ARMSS representatives attend and speak at international conferences, organize conferences of local, federal and international levels.
Specialized Internet-portals at the ARMSS have been at work for nine years. The one of the largest scale is www.ms2002.ru, which became the award-winner in the nomination for the internet resource ‘Positive content 2010’ at the Russian competition ‘RUNET Awards 2010’. As of today, there are 15 independent portals already, which have some 10,000 users registered. Internet resources are used as a means to inform the public promptly and currently, a means to transfuse ARMSS ideas into partners, a way to organize communication between involved people and organize public discussions of the main problem and ways to resolve it.
At this time, we are going to launch the English-language portal of the ARMSS. Its main objectives are: to inform the western world about social achievements in fighting MS we have in Russia, to exchange experiences with overseas colleagues, to replicate the best practices, to raise the status of the ARMSS and that of Russia in the international struggle against multiple sclerosis.
Over 10 years of the ARMSS work, we have implemented more than 50 projects and competitions that are understood as a means to draw public attention and for disabled people to creatively self-express.
Over the time while the ARMSS has been in existence, on a permanent basis the Organization has been engaged in holding regional and inter-regional conferences, initiating public hearings, press-conferences, round-tables, in organizing schools and workshops to share information, in resolving topical issues and pulling efforts from various spheres of the society to improve the quality of rendering assistance to people with MS. Also, there are regular events held to develop human resources and increase the professional level of medical and social workers, to train patients.
Conclusion.
The crowning achievement of the ARMSS is that it has managed to translate, in the general public mind, MS as a problem from the ‘scientific and medical’ category into the ‘social and economic’ one, as well as to improve the quality of rendering medical assistance to Russians suffering from MS.
The improvement of quality of life of people with MS is a result of combined activities of structures of civil society and authorities.
The ARMSS’ ten-year experience demonstrates how rational and highly efficient a patient community establishment can be in management, medical, rehabilitation, propagandist and law-making aspects.
Experience of successfully working patient voluntary organizations like the ARMSS is in demand today and can be used to improve the quality of medical and social assistance when having different diseases: orphan, oncologic, hematologic, metabolic, and others.
Voluntary organizations that function on the basis of patient’s true demand are effective in defining areas for their activities, mobilizing human, informational and material resources, carrying out control over the quality of medical, rehabilitation and social measures; they are active participants of informational community ensuring a two-way connection / feedback between authority institutes and citizens; they promote social rehabilitation and adaptation of disabled people through involving them in socially useful activities, and build a positive stimulative microclimate.
Active and constructive activities of voluntary organizations are an essential institution of the civil society, which must be reinforced, and this necessity has been emphasized more than once by President of the Russian Federation Dmitri Medvedev; this maintains stability and efficiency of a democracy.
References:
1. Belova, N.A. (2000) ‘Neurorehabilitation: Guidance for physicians’, Moscow. Antidor: 568.
2. Vlasov Yan V. (2006) Scientific substantiation for a system to render medical and social assistance to people with multiple sclerosis currently, MD thesis. S.-Petersburg
3. Vlasov, Yan V., Poverennova, I.Ye., Vishnyakov, N.I., Petrova, N.G., Nikiforova, I.G. and Stolyarov, I.D. (2006) ‘Systemic approach in realizing measures to rehabilitate people with multiple sclerosis’, Neuroimmunology (IV:3-4): 74-79.
4. Gusev, Ye.I., Boyko, A.N., Stolyarov, I.D. (2009) ‘Multiple sclerosis. Reference book’, Moscow. Real Time: 296.
5. Gusev, Ye.I., Zavalishin, I.A., Boyko, A.N. et al (2002) ‘Epidemiologic characteristics of multiple sclerosis in Russia’, Journal of neurology and psychiatry named after S.Korsakov; special issue ‘Multiple Sclerosis’: 3-6.
6. Vlasov, Yan.V., Churakov, M.V. (eds) (2009) Model and practices of the Alliance between nonprofits ‘Public expertise in healthcare’, Moscow.
7. Gusev, Ye.I., Zavalishin, I.A., Boyko, A.N. (eds) ‘Multiple Sclerosis and other demyelinating diseases’ – Vlasov, Yan.V. (2004) ‘Disability and multiple sclerosis: rehabilitation process’, Moscow: Miklosh: 540.
8. Stolyarov, I.D., Boyko, A.N. (eds) (2008) ‘Multiple sclerosis: diagnostics, treatment, specialists’, S.-Petersburg: ELBI-S.-Petersburg: 320.
9. Zavalishin, I.A., Osadchikh, A.I., Vlasov, Yan.v. (eds) (2005) ‘Syndrome of the upper motoneuron’, Samara dept of Litfond: 205.
10. Schmidt, T.Ye., Yakhno, N.N. (2010) ‘Multiple sclerosis’, Moscow. MEDpress-indorm: 272.
11. Polman C.H., Reingold S.C., Edan G., et. al. Diagnostic criteria for multiple sclerosis: 2005 revisions to the «McDonald Criteria». Ann Neurol. 2005; 58(6): 840—846.
12. Scalfari A., Neuhaus A., Degenhardt A. et al. The natural history of multiple sclerosis: a geographically based study 10: relapses and long-term disability. Brain 2010; 133: (Pt 7): 1914—1929.
13. Thompson A.J. Does M.S. rehabilitation work? Multiple sclerosis. Clinical and laboratory research 2001; 7: 15.