SUMMER NEWSLETTER 2016

NICE appeal decision

We are pleased that NICE (National Institute for Health and Care Excellence) has accepted part of our recent appeal against their decision regarding Collagenase injections for Dupuytren’s disease patients in England. Patients suitable for Percutaneous Needle Fasciotomy (PNF) will still not be eligible for Collagenase injections but the good news for other patients is the treatment now goes back to appraisal stage. Our chair Anna Schurer said: “We are pleased that NICE have listened to our appeal and will reconsider. Whilst they have upheld their original decision regarding patients eligible for PNF, we remain optimistic that Collagenase injections will be made available for other patients as an alternative to surgery on the NHS. We will continue to lobby for this treatment on behalf of those with Dupuytren’s disease.” Collagenase injections are already approved for use in Wales and Scotland.

#StandUpforPeyronies

Our Peyronie’s campaign was a huge success resulting in around 30 items of media coverage and a successful social media Thunderclap which reached over 100,000 people. We have a new area of our website dedicated to Peyronie’s disease and would like to encourage any men with Peyronie’s out there to get in touch with us and let us know how we can help you and what you would like to see from us in the future.

What do you struggle with?

Recently we carried out a survey on our Facebook page to find out what are the most difficult things to do when living with Dupuytren's. Here’s the top ten:

1. opening jars or bottles

2. driving

3. pushing or pulling trolley, pram, luggage

4. clapping

5. shaking hands

6. using thin kitchen tools, grater or zester

7. holding toothbrush, flossing or hairbrush, or hairdryer

8. exercising with weights, elastic cords, yoga

9. raking leaves, gardening, shovelling snow

10. using door handles

Do you agree? What do you find difficult? Let us know by email, tweet or facebook

Our thanks to BMI healthcare for including this information in an article about Dupuytren's disease on their website.

Postcode Lottery?

A Dupuytren's patient contacted us as he had Collagenase injections (Xiapex) last year, and when he went back to the doctors this year for another injection in another finger he found the NHS boundaries had moved. He is now covered by a different Clinical Commissioning Group (CCG) who will not prescribe Xiapex. Has this happened to you? Have you been refused treatment because of where you live? Get in touch and let us know.

Splinting

The Pulvertaft Centre run by Mr Chris Bainbridge is doing a survey on splinting after needle treatment or surgery. It will be open till the end of July. If you have had surgery or needle release and you were given a splint after, they would like to know what you thought!

LAST CHANCE!

Our survey with the International Dupuytren's Society is still open, make your voice heard about your experiences with Dupuytren's, Ledderhose and Peyronie's disease or any other related conditions.

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British Dupuytren's Society · 22 Wainfleet Close · Wigan, Lancashire WN3 6TG · United Kingdom