Member benefits

Personal needs and possible individual benefits are often the main reasons for people to become members of a patient organisation , and thus the need to address them carefully is important. One of the most important things in the early stage of disease is to acquire knowledge about the disease itself, the best possible treatment and to learn self-management skills. It is, however, also important to address concerns regarding for example, work disability, activity limitations and need for changes of environment, such as housing situations. Such concerns may not always be fully addressed within health-care, and this is where patient organisations can play an important role. Evidence has been presented on the support from patient organisations to result in improvements of knowledge, mastery, coping, control and/or well-being across groups of people with a range of different conditions , and also in a number of new health actions indicating improved self-care .

Awareness raising

To achieve equal terms for people with disability, political initiatives need to be taken in many fields, such as health-care, social-support systems, education and job training, labour market policy and physical environment planning. A main task for patient organisations is also to raise awareness of arthritis in society, to inform about the needs of people with disability and to suggest constructive and creative solutions to tear down societal barriers to full participation. It is also desirable that policy makers and public officers, legislators and the medical profession consult the expertise held by patient organisations when planning innovations and reforms in their fields .

Research

Although the treatment of people with muskuloskeletal conditions has improved tremendously there is still a great need for more research, which is often identified by the members as the top priority for their patient organisation . Furthermore, people with these conditions are probably also the most trustworthy advocates of research in the field, for example, when it comes to fund raising, promotion of certain research areas or research in areas that may be considered controversial.

Member benefits

Personal needs and possible individual benefits are often the main reasons for people to become members of a patient organisation , and thus the need to address them carefully is important. One of the most important things in the early stage of disease is to acquire knowledge about the disease itself, the best possible treatment and to learn self-management skills. It is, however, also important to address concerns regarding for example, work disability, activity limitations and need for changes of environment, such as housing situations. Such concerns may not always be fully addressed within health-care, and this is where patient organisations can play an important role. Evidence has been presented on the support from patient organisations to result in improvements of knowledge, mastery, coping, control and/or well-being across groups of people with a range of different conditions , and also in a number of new health actions indicating improved self-care .

Awareness raising

To achieve equal terms for people with disability, political initiatives need to be taken in many fields, such as health-care, social-support systems, education and job training, labour market policy and physical environment planning. A main task for patient organisations is also to raise awareness of arthritis in society, to inform about the needs of people with disability and to suggest constructive and creative solutions to tear down societal barriers to full participation. It is also desirable that policy makers and public officers, legislators and the medical profession consult the expertise held by patient organisations when planning innovations and reforms in their fields .

Research

Although the treatment of people with muskuloskeletal conditions has improved tremendously there is still a great need for more research, which is often identified by the members as the top priority for their patient organisation . Furthermore, people with these conditions are probably also the most trustworthy advocates of research in the field, for example, when it comes to fund raising, promotion of certain research areas or research in areas that may be considered controversial.

Member benefits

‘Social media’ have become increasingly important as more and more information and communication happens there. It is thus important for the SRA to be recognised for accurate information and its message is that ‘nobody knows better than we’ about musculoskeletal diseases and how it feels to live with arthritis. This, of course, necessitates the SRA to be trustworthy and that information launched is correct and updated. The SRA has its own web page with 24 000 unique visitors a month. It is also available on Facebook and Twitter with 80 posts a month and 3–28 likes per posting, totally monthly 1700 likes. The SRA president has a blog with 70 visitors per day, where members can follow her work when promoting the SRA policy at different meetings with media, policy makers, public authorities and health-care representatives.

‘Written materials’ are released as another measure to fulfil the need for information, particularly among the recently diagnosed and those that are not computer literate. Leaflets contain simple information on different diagnoses ( n = 25) or areas of concern, for example, foot problems or teeth health. Most of these products come in two versions, a one-page leaflet that is free of charge and another more extensive one for sale at a low cost.

‘The Rheuma direct helpline ’is staffed by nurses experienced in rheumatology and open 4 days a week, totally 16 h. This is an important source of information tailored to a specific individual. Around 1100 people called during 2011, and their problems concerned pain, medication, treatment, sick leave legislation, etc.

The Arthritis World Journal is issued bimonthly in 50 000 copies that are provided to members and a wide range of stakeholders such as health-care providers, policy makers, journalists and scientists. It covers a wide range of topics on political issues related to the rights of people with musculoskeletal diseases, portraits of interesting people with arthritis or people working with or for them, tailored exercise programmes, reports from local branch activities and much more. Particularly appreciated are the Scientific supplements , themed issues on for example, gender perspectives in research, basic research or physical activity research. The most recent one ‘From research to action’ on the evidence for physical activity and exercise was released in 75 000 copies in Swedish and 2000 in English.

‘Lectures’, aiming at increased knowledge, are central to the SRA as it is increasingly important for people with musculoskeletal diseases to be competent in self-management as well as in finding the best care services and treatment facilities. Many members are not familiar with new technologies, which is why written materials and lectures are still important. Most of the lectures focus on certain diagnoses and their medical treatment and/or how to handle symptoms and the inconvenience resulting from them. Mindfulness, a healthy lifestyle and pain management are recent topics. Around 50 such lectures are organised yearly around the country with an estimated average of 50–100 people in the audience. In connection with the yearly World Arthritis Day, lectures, open to the public, are held by a number of researchers, who disseminate their recent results. High attendance rates of several hundred people, also via broadcasting over the web, are common.

‘Self-help groups’ are organised in order for members to share personal experiences, learning together and supporting each other, which is important in musculoskeletal diseases. The SRA has thus already since the 1980s, together with health-care providers, produced a series of booklets on joint protection and self-management to be used in health-care, which has been sold in thousands of copies. Further, the SRA has translated and adapted the Arthritis Self-management Program to Swedish conditions and released manuals and participant handbooks to be used in its local branches with trained lay leaders. The material has been sold in 3000 copies and some 500 lay leaders all over the country have been trained. The SRA has also quite recently launched patient school booklets and organised courses to provide the primary health-care with tools to support their patients with osteoarthritis and fibromyalgia to deal with their ailments and life situations. This is run jointly with physiotherapists as 2-day courses for 30 participants. All together, six courses have been performed so far.

‘Exercise groups’ fulfil the goal of the SRA to inform, educate and inspire its members to exercise, which is also one of the most popular activities carried out by its local branches. Some 1700 members are estimated to be involved in any of the exercise groups offered all over the country. Unfortunately, despite being highly appreciated by members, the necessity of exercising in heated pools is often questioned due to poor scientific evidence and high costs. The SRA has thus lately, particularly during the 2008 campaign ‘Association on the move’, tried to diversify choices beyond that of exercise groups in heated pools. Physiotherapists were hired to create new exercise programmes and written information materials that were posted on a specific web platform along with short exercise movies, exercise calendars and other sources of inspiration for physical activity. Physiotherapists also trained lay leaders to instruct and supervise the new programmes and lectured about the health benefits of physical activity and exercise. Thus, it was possible to move from almost 100% pool exercise offered by the local branches to also include 20% other types, such as hand and foot exercises, Nordic walking and low-impact land-based aerobics. This way of exercising in groups, led either by a trained member or by a physiotherapist, is a great way of improving stamina as well as socialising with peers.

Awareness raising

‘Public activities’ are carried out in connection with the World Arthritis Day each fall. Scientific lectures have already been described above. To create public awareness about musculoskeletal diseases, public areas, such as the Central train station in Stockholm, where thousands of people pass every day, are rented. Information is given about musculoskeletal conditions, and public attention is sought by involving well-known celebrities in activities related to physical activity, for example, dance with performances by artists from the TV show ‘Let’s dance’. An attempt to surpass a Guinness record on the world’s largest yoga session led by a well-known celebrity is another example of public activities. This also creates media attention, which serves the aim of awareness raising even better than just approaching passers-by.

In addition to the ‘media’ attention described above, the SRA president and other central persons of the organisation are often involved in various media debates relating to the needs and rights of people with musculoskeletal disease. Quite recently, the SRA also collaborated with one of the major Swedish women’s magazines on a themed issue about osteoarthritis. As to ‘political influence’, Sweden has an institutionalised system that gives the right for, for example, patient organisations to give an opinion before legislation is presented on issues of their concern. They may also join as experts in public investigations, which is a great opportunity for early influence on new proposals. It is thus crucial for the SRA representatives to be alert and accessible and to have established good relations with policy makers, by for example, offering assistance with information, materials or general support. For that purpose, key persons of the SRA visit the parliament each December 13, Lucia Day, to invite members of parliament to have coffee with them and learn more about the SRA agenda. SRA regional and local branches perform similar work to establish good relations and gain influence on health-care issues and social-support systems that are managed regionally and locally.

To be part of the political debate, taking an interest in what is happening in that arena is crucial. Participation in conferences and meetings and joining the media debate are necessary for a patient organisation. However, it is important not only to criticise, but also to be constructive, proactive and to make an impact on the political arena, by for example, presenting investigations and proposals. One example is the SRA initiative ‘Black on white’ presenting health economic facts on costs of appropriate treatment of people with musculoskeletal diseases and the subsequent benefits in saved societal costs. This initiative was launched in the parliament and broadcasted nationally. Another example is the ‘Ladder to work life’ presented in a leaflet including five steps necessary to be taken for people with musculoskeletal disease to return and participate in work life.

A great area for networking and making political impact is the ‘politician week’ each summer, a tradition since decades where the political parties are responsible for the programme, with one day for each party. Around 1500 seminars on a wide variety of issues are held that week and there are rich opportunities to meet with policy makers at all levels and from all parties. For a patient organisation, this is a great opportunity to meet that many policy makers at the same time, not to mention the 15 000 visitors, all with impact and influence in the political and media sectors. During the past years, the SRA has been invited to participate in 5–7 seminars, mainly on issues related to health-care and medical treatment. For the past couple of years, the SRA president has repeatedly been ranked among the 100 most influential persons in Swedish health-care.

‘Cooperation with health-care providers’ has been a natural part of SRA activities since the early days as nurses, physiotherapists and medical doctors were among its founders and have acted as collaborators ever since. Most people with muskuloskeletal diseases are dependent on regular contacts with the health-care system for the rest of their lives. Thus, issues related to the quality, capacity and safety of the health-care system are important to the SRA, and it needs to learn from and be informed by health-care providers. For example, SRA representatives are invited to the annual meetings of the National Society of Rheumatology and the Swedish Rheuma Forum, which create good opportunities for a patient organisation to get updated on the latest science and take part in interesting discussions in the field of rheumatology. More recently, the SRA has started collaboration with the Society of Orthopaedic Surgeons, rehabilitation specialists and representatives from primary health-care to satisfy the needs of members with osteoarthritis, osteoporosis and generalised pain. It is easy to think in terms of health-care providers supporting the patient organisations, but a strong patient organisation could also be of valuable support to health-care providers. One example is the crucial role of the SRA in saving rheumatology from becoming a subspeciality of internal medicine. Without the mobilisation of the SRA’s political and other networks, nationally, regionally and locally, it is rather likely that Sweden would have lost rheumatology as an independent speciality. ‘Patient partners’ and ‘Osteoarthritis communicators ’are other good examples of collaboration between health-care providers and the SRA. Since 1995, 100 patient partners with RA have been trained, which means that every medical student in Sweden today has the opportunity to hear a personal story told by a patient and get feedback on their manual assessment skills by someone who knows what is appropriate. Similarly, the SRA coined the concept of ‘Osteoarthritis communicators’ in 2006 and created a training programme for them to educate primary health-care providers about osteoarthritis, with themselves as examples.

Research

‘Fund raising’ and ‘research funding’ are important ways of supporting and influencing research with respect to muskuloskeletal conditions. Since a couple of years, the SRA has intensified its efforts to raise funds for research, and this year it was able to fund research with SEK 11 million (∼1.25 million Euros). Although the applications are scrutinised by highly respected researchers of the SRA scientific board and awarded in competition, the SRA may sometimes devote a certain amount for ‘prioritised research areas’ that are recognised as underfinanced or particularly important for its members. Examples of such areas that have received earmarked funding resources through the years are health-care research and pain research.

‘A research council’ consisting of SRA-elected board members and officers along with medical doctors and representatives of nurses, occupational therapists and physiotherapists watch and discuss societal and political changes and opportunities that may influence research in rheumatology, and take initiatives to optimise resources for research on musculoskeletal diseases. One great effort and achievement of the SRA research council was a series of activities eventually resulting in SEK 90 million (∼10.2 Euros) that was awarded to research on inflammation carried out by the ‘Combine Sweden’ consortium.

‘Patient research partners’ are SRA members that have been identified as suitable and then trained within the SRA to participate in research in many different ways. They may thus serve as advocates for research, as fund raisers or as members in research groups with the specific lived knowledge that is unique to a patient. This activity was launched in 2008 by the SRA and a couple of other Swedish patient organisations as a special programme that has later been included as an ordinary SRA activity. To date, 25 research partners have been trained within the SRA and most of them are active in different research groups.

Projects

The Swedish Inheritance Fund supports, after formal application procedures, high-quality projects run by patient organisations wanting to try new activities aiming at better treatment, improved health-care or better lives for people with disease and disability. The SRA has been successful during many years in running such projects. Some of them, such as the above-mentioned Arthritis Self-management Program, the Osteoarthritis Communicator Project and that on Patient Research Partners, have later transformed to become part of ordinary SRA activities. Other good examples of successful projects are the ‘Live and love with arthritis’ project, the ‘Nike’ project on better access for immigrants to the Swedish health-care system and the ‘Accessible packaging’ project in collaboration with industry.

Campaigns

Every fourth year, the SRA launches yearlong campaigns targeting all three main activity areas: member benefits, raised awareness and research. In 2008, the very successful ‘Association on the move’ campaign was run to increase awareness among members, health-care providers and the public on the safety and benefit of physical activity among people with musculoskeletal conditions. Further aims were to educate members and lay exercise leaders, to provide them with tools in the form of a variety of different exercise programs and to inspire the entire organisation to recognise physical activity as an important way of improving health. This year’s campaign ‘Knowledge that comforts’ aims to offer a range of activities to increase knowledge and provide methods for better life despite rheumatic disease under the theme “We know what it is like to live with a musculoskeletal disease”. In addition to these major campaigns, the SRA also launches more limited campaigns. One example of such a campaign is the ‘Mice or men?’ campaign, where the SRA advocated animal research if well motivated and without alternatives.