Celebrating 45 Years of Our Charity
This year, 2018, the Paget’s Association celebrates 45 years devoted to supporting to all those affected by Paget’s disease. We achieve this by providing advice and information, by funding research and through projects such as the Centres of Excellence and a new clinical Guideline which we hope to publish soon.
When Ann Stansfield’s husband, Alf, was diagnosed with Paget’s disease she was dismayed that there was nowhere she could take him to be treated. They experienced considerable difficulty obtaining information about the condition. Determined therefore, to help her husband, Ann spent many hours corresponding with hospitals, specialists and universities all over the world in an attempt to learn about Paget’s disease and to raise awareness of it. Through sheer determination and persistence, Ann not only made progress, but also began to support many other people who were affected by Paget’s disease. Even when visiting family in Australia, Ann didn’t miss an opportunity and went on local radio to publicise the effects of, and need for worldwide awareness of the condition.
The Birth of the Paget’s Association
Ann‘s commitment never diminished and aided by an old-fashioned typewriter from her home in Middleton, Greater Manchester, she gradually attracted the attention of specialists with a particular interest in Paget’s disease. Ann gained support from Dr Allan St. John Dixon and the Rehabilitation and Medical Research Trust, which led, in 1973, to Dr Dixon helping Ann establish our Charity, ‘The National Association for the Relief of Paget’s Disease’, which remains our official title. In day to day use, however, this has been shortened to the ‘Paget’s Association’. Dr Dixon was the first Chairman of the Charity and subsequently served as Honorary President until 2011. He was a consultant rheumatologist at the Royal National Hospital for Rheumatic Diseases, in Bath, from 1966 to 1986. Dr Dixon received an OBE for his services to medicine. He, sadly passed away in 2014, at the age of 92. To support her work, Ann raised funds by making, collecting and selling goods on the outdoor market in Oldham, three times a week. The Charity went from strength to strength, many people were supported and research projects were undertaken into the causes of the disease. Alf passed away aged 77, on the 8th April 1984. He had suffered for at least 27 years with Paget’s disease. In the Association’s newsletter Ann wrote, “It was his wish for ‘No flowers but if desired, donations to our cause’. I hope to continue this work in his memory.”
Salford Paget’s Disease Service
In the late 1980’s, Professor David Anderson, a consultant at Hope Hospital in Salford (now Salford Royal), asked his secretary, Tricia Orton, to assist Ann with the various tasks involved in administering the Charity. Professor Anderson established the Salford Paget’s Disease Service. As Ann’s health deteriorated Tricia took over the administration work and the Charity’s office moved from Ann’s front room to Hope Hospital.
In 1983, Ann’s hard work was recognised when she received the MBE.
The first organised local support group began in 1990, in South Manchester, and supported many patients, carers and family members as they shared their experiences and knowledge of the condition. The late Ron Taft became involved with this group and you can read more about Ron on page ?
The Good Work Continues
In Ann’s final letter to members, during the summer of 1991, she wrote, “I would ask you all to continue giving your support whenever and wherever possible so that together we can overcome the problems facing sufferers and ultimately reach the goal towards which we are all working”. Since then there has been considerable improvement in the treatment of Paget’s disease, however, Ann’s message still applies. The Charity needs the support of its members to be able to continue. Ann passed away, aged 85, in 1995 and the headline in the local newspaper read, ‘Farewell to Mrs Charity’. All those involved with the Paget’s Association today, are committed to building on the work that Ann started from her front room forty five years ago.
The Team Today
Our Patrons include, Sir Henry Paget who is the great great grandson of Sir James Paget, a pathologist and surgeon, whose name was given to Paget’s disease. Our Honorary President, Graham Russell, is a Professor of Musculoskeletal Pharmacology. He has played a central role in studying the biological effects of bisphosphonates, and in their clinical development and evaluation for the treatment of bone disorders, including Paget’s disease. Led by Chairman, Professor Roger Francis, the Board of Trustees is made up entirely of volunteers, with various skills, who all strive to make a difference to the lives of those with Paget’s disease. Members of the current board include people who have personal experience of Paget’s disease, researchers and clinicians.
Diana Wilkinson, is our Specialist Nurse. She has been employed by the Paget’s Association for 6 years. She maintains and develops the Charity’s support services which include the Nurse Helpline, and our evidence based literature. She introduced a new Support Network and online Forum so that those with Paget’s could talk easily to others. Diana plans the agenda for our Information Days, ensuring expert speakers are on hand to answer questions. She also gives talks and represents the Association at conferences and events where she educates many who are involved in the care of those with Paget’s disease. Diana also facilitates a support group in north Manchester and for the last few years has been responsible for the production of our newsletter and the management of our website. Sue Clegg, our Office Manager, has been with the Association for twenty years, the last seven of which have been in her present position. As can be deduced from her title Sue takes responsibility for the day to day running of the Association’s office. In addition to responding to members’ enquiries, she has to respond to an extremely wide range of new government initiatives, which have included work related pensions, and more recently, the new General Data Protection Regulations, coming into effect on 25th May this year. Sue works closely with the Trustees in managing the finances of the Association, and ahead of their quarterly meetings provides all the relevant documentation and paperwork which will form their agenda. She produces the minutes of all meetings including the Annual General Meeting. Organising our Information Days and determining venues falls within her remit, as do fundraising activities such as the 200 Club, the London Marathon and the Ride London 100 cycle event. In addition, we have recently employed a part-time Membership and Communications Administrator.
Ann would be proud of the many achievements of the Association over the years. Recent developments include the Paget’s Association Centre of Excellence scheme and the development of a new Clinical Guideline for Diagnosing and Treating Paget’s disease.
45 years after the birth of the Charity, our aims remain the same:
• To offer support and information to those with Paget’s disease.
• To raise awareness of the disease among health professionals and the public.
• To encourage and fund research into all aspects of Paget’s disease.
Can we Help You? It is important that we remember why Ann Stansfield set up the Paget’s Association, however, needs can change and it is therefore, important that you, our members, continue to tell us what you think the Charity can do to support you. You can let us know by email to [email protected], by writing to our office, or by telephoning 0161 799 4646. We look forward to hearing from you.