The medical understanding about this disease, which was then called ankylosing spondylitis (AS), was hideously ignorant in the 1970s. Doctors were taught that women virtually never got AS and that the disease was very rare.
Young men and women were told “to get on with it” and by the time the diagnosis was made the spine had often fused.
People were often so bent that when standing up their face pointed at the floor, leading to life in a wheelchair.
Medical treatment consisted of painkillers, such as aspirin and paracetamol, which were not effective.
Then there were also treatments which could make the condition worse, such as encasing the patient in plaster of Paris corsets. Immobilisation of the spine was fashionable for various forms of back pain and of course was sheer agony.
The first advance was the invention of anti-inflammatory drugs (NSAIDs) such as phenylbutazone and later indomethacin.
There was one treatment that did give lasting relief – full spine radiotherapy. However, it was found that some subsequently developed leukaemia and skin cancers, so this treatment was withdrawn.
So, in short, the management of AS was appalling.
A huge breakthrough came with the connection between AS and the HLA-B27 genetic marker in 1973.
This made it possible to tie together the recognised links with all the different presentations of this family of conditions.
This work was largely undertaken by Professor Verna Wright in Leeds plus colleagues in Sheffield. It meant that we could now separate AS from the other arthritic conditions and develop specific treatments.
Rheumatology, a specialisation for doctors interested in arthritic conditions, developed after the Second World War. The first rheumatologists treated all types of medical conditions along with arthritis. Doctors focussing only on rheumatology were appointed from the 1960s.
The rheumatology unit at the Hammersmith Hospital was the first centre to bring together patients with AS and offer them evening classes for exercise and hydrotherapy. Here was a unit that realised that exercise and movement rather than immobilisation was the best management for AS.
One of the doctors working in this department, Dr Allan St John Dixon, was eventually appointed consultant rheumatologist at the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD).
Under his direction, one ward was used to care for patients with AS for intensive physiotherapy and hydrotherapy, admitting patients from all over the country for two weeks.
The formation of the NASS Charity started as a result of the growing number of articulate patients at the question-and-answer sessions hosted by Dr Dixon. People highlighted the many problems that were glossed over by anybody who came into contact with them. For example, young people couldn’t really tell their friends about all their pain and inability to socialise which lead to isolation and depression.
These patients were also keen to support research into AS.
The first meeting at the RNHRD to lay the foundations of NASS took place on 15 January 1976.
A small committee was formed and one of the patients, Mike Tanfield, took on the mantle of Organiser/Coordinator. The founding objectives of NASS were
Dr Dixon arranged for Commander A R C Rowe to join the second meeting of the steering group as he was knowledgeable in the formation of medical charities. He produced the founding draft constitutional necessities, such as governance as laid down by the Charity Commissioners. He explained that we needed a Board of Trustees and qualified auditors to present annual accounts, along with a solicitor.
I joined the third committee meeting and have been an enthusiastic member ever since. Early on it was decided to produce a guidebook for patients which I wrote and was updated several times. These were distributed around the country to be available in all the rheumatology departments. It is still available today as the ‘Living Well’ guide.
Dr Dixon invited other rheumatologists to set up local therapy groups around the country and become local branches for NASS. A number of NASS branches have been around for over 40 years now.
Mike Tanfield left the position of Secretary after a couple of years as he was appointed to a full-time job in Bristol. He had set the foundations for the development of NASS and we owe him a debt of gratitude for all his hard work.
Subsequently paid officials were able to be appointed, and one perhaps should be mentioned and remembered by many members, namely Fergus Rogers. He set NASS on a sure road which allowed it to grow into the successful organisation that supports and speaks for people with axial SpA.
Fifty years have seen tremendous improvements in our understanding of the condition and NASS has been hugely influential in making available the biologic drugs to so many of our members. I believe that the care and enthusiasm of the axial SpA community lies entirely to the credit of NASS
I have no doubt NASS will continue to flourish and it is supported by very many superb experts based all around the UK. However, it is not the experts in medicine and physiotherapy who are this society, it is the members that are the life blood of NASS.
