The British Dupuytren's Society is a UK charity founded in 2011 as a patients’ organisation, supported by medical professionals, and working alongside the International Dupuytren Society (IDS).
The Board of Trustees consists entirely of volunteers: three of whom are Dupuytren’s patients, and two Doctors one of whom is a surgeon. The patient Trustees have personal experience with Dupuytren’s including mild Ledderhose, treatment via radiotherapy in Germany and the UK, and repeated surgery in the UK. As volunteers we meet regularly via Google+ to discuss the charity, its status, work in progress and new suggestions for projects. The Society also has a panel of volunteer Doctors acting in an advisory capacity.
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 financial turnover does not meet the minimum requirement we cannot 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. This remains an ongoing effort, as we respond to Facebook posts, add occasional tweets, and revise the website according to the latest news and developments.
We have been liaising with Pfizer, the company that markets Xiapex, attended one of their road shows and went to a workshop they organised to explain the NHS structure to medical charities (we are not affiliated to Pfizer 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.
One of our trustees gave a lecture to the North East British Chiropody and Podiatry Association, to educate them on Dupuytren’s and Ledderhose. The feedback from this lecture was that it was well received, including the topic on Dupuytren’s, even though that was beyond the sphere of interest for a Podiatrists conference. The Society is available to give talks on Dupuytren’s and Ledderhose to other organisations that could benefit.
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). One of those sites has now changed and is a lot more informative.
Our next step was to join the IDS as a sister organisation, and apply to the IAPO for a directory listing.
Recently we joined the NCVO, applied to Google+ for their sponsorship to make our website better known ( ie get a ‘sponsored link’ ) and got in touch with ‘Men’s Health Forum’, a charity that is specifically interested in conditions that affect only men ( Peyronie’s) or that affect men earlier or worse than women ( Dupuytren’s) .
Added for the 2012 AGM review
We created a patient leaflet about Dupuytren's, which provides information about the disease, the treatments available in the UK, stages of the disease they are used for, availability on the NHS or private, side effects and expected recovery time, etc. This leaflet can be used by patients and doctors to discuss the options for treatment.
In September 2012 we wrote a letter to the BSSH (British Society for Surgery of the Hand), asking them to change the Dupuytren's guidelines on their website and include radiotherapy as possible treatment, as per NICE recommendations. We have received their reply: as a Society they do not endorse radiotherapy for Dupuytren's, because they don't consider the benefits to be enough in comparison to the possible side-effects. We are considering our reply to this.
We are working on the content for a patient information leaflet on Ledderhose Disease (Plantar Fibromatosis). Our first goal for this is to send it to the Bofas (British Organisation for Foot and Ankle Surgeons), as they don't mention the condition on their website.
Milton Keynes PCT has just (25th Sept 2012) published new guidelines with a pro-forma referral form for Dupuytren's. They advise referral by GP's for treatment, only if the contracture in one finger is 40-45 degrees, or 20 degrees per finger if in 2 or more fingers. In other cases special permission and funding has to be applied for. As this may be too late for PNF or Collagenase, and in the case of the little finger, late for a good result even with fasciectomy, we are planning to write to them asking that they change their guidelines.
Our website has been created from scratch in one year, and so has a had a lot of information added to it. We are going to review the design, layout and content with the help others. We welcome feedback from members, patients, doctors and the public about the website.
NICE will review the use of Xiapex for treating Dupuytren's, to evaluate whether they should provide guidance for treatment on the NHS. If this happens we will participate by putting patients views forward, so anyone who feels strongly about the use of Xiapex (positive or negative) please let us know, including your reasons!
In order to keep the website up to date we are constantly reviewing the latest publications on Dupuytren’s and related conditions, including news, treatments and basic research. Upon review we sometimes follow up with the International Dupuytren's Society, or doctors and researchers in the field. We will then include the information on the website as appropriate.
You can contact us here, volunteers and donations to continue our work are always welcome.
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