History of Behçet’s UK (formerly Behçet’s Syndrome Society)
Behçet’s (pronounced Bet-jets) is a rare, complex and lifelong chronic multisystem disorder caused by disturbances in the body’s autoinflammatory and auto immune system. Behçet’s is named after Hulushi Behçet (1889-1948), a Turkish dermatologist and scientist, who first recognised the syndrome in one of his patients in 1924. Although Behçet’s can affect people of any age, it most commonly affects those between the ages of 20 and 40, though paediatric cases appear to be on the increase (maybe due to increased awareness). Common symptoms include mouth ulcers, genital ulcers, eye inflammation, joint pain (arthralgia), headaches, skin rashes, thromboses, central nervous system involvement and gastrointestinal ulcerations.
A syndrome is a collection of clinical features that may, or may not, be one condition and may be the presentation of several similar conditions. As there are differences in the incidence of Behçet’s, and of its various manifestations in different countries, and since we do not yet know the exact cause, some physicians prefer to keep an open mind and use the term syndrome. Whilst calling it Behçet’s disease may suggest that we know that it is a single entity with a single cause in all cases, by 2010 a review noted the term Behçet’s disease was used in over 80% of publications throughout the world. The NHS uses that term as does the International Society for Behçet’s Disease.
Judith (Judy) Buckle, a nurse and Behçet’s patient, was the founder of the Behçet’s Syndrome Society in 1983.
The Society arose from a few friends and Judy’s GP deciding to raise money for an electric wheelchair. The original members were Frank Whiteside, Bill Burn, Paul Woodrow and David Robson. The efforts of this group came to the attention of the Norman Collinson Trust, a local York charity, who met Judy and gave her the wheelchair. They also heard her wish to establish a national charity for people with Behçet’s, and so provided £150 towards administration costs to allow the Society to be formed.
The Society, initially, was based in York and driven by the determination of Judy who organised countless events to raise funds.
Judy passed away in June 1997 and wanted a celebration of her life at her funeral, to show what had been achieved. By continuing the Society and recognising how much Judy gave of herself, despite her disability, we continue to celebrate.
Between 1984 when the trust was incorporated and accepted by the Charity Commission and 1998, the charity expanded very slowly gaining members and becoming recognised by Behçet’s disease consultants as an organisation that represented the views of its member patients.
1998 to 2003 were defining years as the membership numbers slowly increased enabling the Society to claim to be the voice of Behçet’s disease patients in the UK. This culminated in a presentation to the Behçet’s Forum which is a meeting of Behçet’s disease consultants and scientific advisors and is considered to be one of the influential groups in Behçet’s disease research in the world.
Between 2004 to 2006 the Society, having raised sufficient reserves, decided to spend them and to engage various consultants to advise on the expansion of the organisation. This lead to applications to trusts and organisations able to help the growth and resulted in a new more dynamic website and the decision to appoint a full-time director to oversee the expansion of the Society.
The new Director started on 1 January 2008, and a business plan was completed in June. New literature and PR packages were produced, and the membership database was upgraded to reflect accurate membership figures. More PR and fundraising was encouraged from the members, and a new trustee committee structure was put in place. A pro bono solicitor helped to update the constitution to reflect current Charity Commission guidelines. A Medical Advisory Panel was also established in 2008.
The Society undertook a survey of its membership during 2008 which revealed that Behçet’s Syndrome is more debilitating than previously understood. The Quality of Life survey revealed that the impact of Behçet’s Syndrome is similar to that of Multiple Sclerosis which has an approved patient pathway through the NHS. With this, and the knowledge that on average it was taking 12 years for Behçet’s patients to receive a diagnosis, the Behçet’s Syndrome Society began an application to the National Specialised Commissioning Group for Centres of Excellence to be established to treat patients with Behçet’s Syndrome.
The bid to establish the Centres of Excellence was successful and the three Centres were established in April 2012, in London, Birmingham and Liverpool. Originally managed by The Society, it was soon decided to establish a charitable company limited by guarantee, the Behçet’s Patients Centres, to manage the NHS contract whilst ensuring the vision for patients was delivered, in conjunction with the Behçet’s Syndrome Society.
Since this time both the Behçet’s Syndrome Society and the Behçet’s Patient Centres have continued to develop. Fostering education, collaboration and networking in the medical and allied professions, together with the promotion and assistance of research into Behçet’s, and concomitant fundraising, are the current foci under the updated banner:
Caring for individuals with a rare, complex and lifelong disease; promoting research into the cause,
effects, treatment and management of Behçet’s
In October 2018, after consulting our members, the trustees voted in favour of renaming the society to Behçet’s UK. The decision behind this was to step away from the ongoing debate among medical professionals whether Behçet’s is a disease or syndrome and to emphasis that, in line with our constitution, we are here to support members in the UK.