Foundation & Role of NASS

Patient education is considered by most rheumatologists and physiotherapists to be essential in efficient disease management.

NASS was founded as a registered charity no 272258 by patients, doctors and physiotherapists in 1975 at The Royal National Hospital for Rheumatic Diseases in Bath. The hospital was (and still is) treating groups of patients on a three week (now two) intensive physiotherapy programme. The early groups of patients realised
the value of patient education which they were receiving through wide-ranging discussions between themselves and the medical staff.

They were therefore stimulated to form a committee of a society whose main objective, through various ways, would influence a better disease outcome in their fellow spondylitics. The society has attracted over 15,000 members since 1975, and over 8,000 of them are still active members.

Other Similar Worldwide Societies

NASS has also been instrumental in the foundation of similar societies in 25 different countries. They have formed themselves into a world-wide special interest group (the Ankylosing Spondylitis International Federation: ASIF). The NASS Director is also the President of that group. - return to top

WHAT IS THE ROLE OF NASS:

Guidebook For Patients

NASS produces and distributes to rheumatologists and physiotherapists a 24 page "Guidebook for Patients". (Download PDF Copy in Zip File)The society has donated over 110,000 of these books and continues to receive daily requests from hospitals and individuals. - return to top

Newsletter

This is the NASS flagship twice yearly membership publication. The journal continues the society's aims of patient education. It carries a variety of articles not only of interest to those who suffer from the condition but also to members of the para-medical professions who treat those people. Articles frequently include news of current research, especially research in which the society is involved. It also contains a section with news from the existing branches, and announces the formation of new ones. A section containing news from our international sister organisations is also a regular feature. Members can read in the popular correspondence section about some of the problems associated with the condition experienced by others and how they cope with medical and social problems. Many members of the medical profession have long considered this the country's best disease specific journal. - return to top

Other Publications

NASS produces other booklets, as well as an exercise cassette tape, and video and DVD film (Fight Back) illustrating the special exercises which should be carried out in the home on a regular basis. - return to top

Support Branches

NASS forms and supports a network of branches around the country. Each branch is run by a committee consisting of highly motivated spondylitics, and is backed by physiotherapists who support the branch members through supervised physiotherapy sessions herd one evening a week. Without these committees, and the supporting physiotherapists, branches would not exist as supervised physiotherapy is the core activity of each branch. Many of these branches have responded to the special relationship between themselves and those physiotherapy departments by supplying, through local fund raising, additional or replacement equipment for some of those departments (ie: gymnastic balls, exercise mats, static exercise, rowing and cycling machines, and in one case an electric hoist for a hydrotherapy pool, and in another a multi-gym). - return to top

Educational Symposia

Most years NASS organises a symposium in a different city. These meetings are usually attended by between 200 to 300 people. Consultant rheumatologists, other doctors and scientists, and members of the para-medical professions, present a day-long series of lectures on different aspects of the condition. NASS members and members of their families are able to ask questions at the end of each lecture, or session. - return to top

Research

Britain is one of the two or three leading countries researching into this condition and other forms of arthritis. Indeed, most of the important discoveries about this condition in the last 25 years have originated in this country. NASS does not have enough resources to influence pure scientific research, however for the last few years it has made a unique contribution in collaboration .with the Royal National Hospital for Rheumatic Diseases in Bath to epidemiology studies using its large membership. This is a continuous programme and the research workers have produced approximately 30 different papers which have appeared in the world's leading rheumatology journals. Ankylosing spondylitis is a very variable condition and this new information is beginning to give doctors information about future progression and disease outcome in their patients, and in different groups of their patients.

It is also making significant contributions to advanced genetic research to a team in Oxford. We have provided research works with sets of identical and non identical twins, as well as families where the disease appears to g o from generation to generation with increased frequency. The researchers are looking to identify two or three additional genes which would explain there differences. These genes would be in addition to HLA B27.- return to top

Counselling & Advice

NASS receives a daily stream of enquiries by email, post, and telephone, from people who have the condition seeking advice on all aspects of the disease. They frequently turn to NASS as they know that most of their GPs are not equipped with sufficient knowledge to answer most of their questions. Visits to their rheumatologists, who can answer these questions, are infrequent, and patients, aware of the queues in the waiting room, often feel inhibited from discussing what is on their minds. - return to top

Educating Members of The Medical & Paramedical Professions

A selected number of rheumatologists and physiotherapists receive the Newsletter free of charge. NASS is also frequently asked to give talks at conferences organised by medical special interest groups (ie: nurses in rheumatology). The society also attends most major rheumatology meetings. At these meetings a display stand promotes the society by displaying its literature, publicising its branches, donating literature to the delegates, and raising the profile of the society and the condition. - return to top

Funding of The Society - Make a donation

How is the society funded? With difficulty is the short answer. Approximately 55% of our annual income is from members' subscriptions, 25% from donations from head office fund raising, 10% from internal sales and donations, and the remaining 10% from sundries. Small societies such as NASS are finding that funding from outside donors has become progressively harder in the face of the recession. This has led to a reduction in corporate funding. Many of the larger and higher profile charities representing more emotive issues have responded more aggressively by increasing the staff of their fund raising departments, sometimes by several hundred percent. This means that in some cases these departments are run by between 30 to 50 full-time fund raisers. NASS has two staff running every aspect of the entire society. - return to top