The British Dupuytren’s Society is a UK based charity founded in August 2011 as a patient organisation, supported by medical professionals, and is a daughter organisation of the International Dupuytren Society (IDS).
The Board of Trustees consists entirely of volunteers, the chair and the treasurer are Dupuytren’s patients and the other two patient trustees are a Ledderhose and a Peyronie’s patient. Our Doctors trustees are three hand surgeons one of whom is also involved in research, one Urology consultant, two radiation oncologists and a podiatrist.
The Society also has a panel of volunteer Doctors acting in an advisory capacity, and recently we were joined by a massage therapist as advisor, who is very experienced treating Dupuytren’s patients.
By 2016 we have set up a membership option so people can be kept up to date via a newsletter with the latest news or patient stories.
The British Dupuytren’s Society was founded in August 2011. Our first step was to create our Constitution and Board of Trustees. We are now registered with HMRC for tax-exempt status as a charity, but since our yearly income does not meet the minimum requirement we can not yet apply to become a registered charity.
We put a lot of effort into creating our presence on the Internet by building our website, opening and maintaining accounts on Facebook, Google+ and Twitter and writing a blog. This remains an ongoing effort, as we respond to Facebook posts, tweets, and revise the website according to the latest news and developments.
We have been liaising with Pfizer and later Sobi, the company that markets Xiapex, attended a road show and went to a workshop Pfizer organised to explain the NHS structure to medical charities (we are not affiliated to Pfizer or Sobi and evaluate all medical information and treatments independently).
We can provide patient organisation submissions to regional NHS Boards who are evaluating different treatments for Dupuytren’s under the NHS. Our patient organisation submissions to Wales, Devon, the North East and Scotland have led to a successful adoption of Xiapex as a treatment option for Dupuytrens within the NHS. This work is ongoing and we are assisting with submissions to other NHS boards in the UK.
We also emailed several GP training websites, asking them to update their information on Dupuytren’s and related diseases, as most still state that surgery when 30% contracture has been reached is the only treatment. We think doctors and patients should become more aware of the possibility of radiotherapy, PNF (both have guidance by NICE) and Xiapex (accepted by quite a few PCT’s by now). Some of those sites have now changed and are a lot more informative.