Tuesday, 16 August 2016

New trustees

Great news today! We have two new trustees, to help our charity.

Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.

Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.

Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.

New trustees

Great news today! We have two new trustees, to help our charity.

Dr George Flanagan, podiatrist surgeon with a special interest in Ledderhose has agreed to join on the Ledderhose side of things, and will be working closely with Gary. Dr Flanagan works in Blackpool NHS hospital, and in private practice in Fylde, and is sure to be an asset to our charity.

Mr David Ralph is joining us on the Peyronie's side. He has already worked with Birgir and Mr John Glees on the recent awareness campaign, and has agreed to become a permanent trustee. He has published extensively on Peyronie's and has a lot of experience treating men with the condition. We are extremely lucky to have him on board.

Welcome gentlemen, thank you so much for your efforts to help in fighting these diseases.

Sunday, 24 July 2016

July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.
 
The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey. http://www.bssh.ac.uk/patients/bssh_james_lind_alliance_partnership.aspx  
 
We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!
 
We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

Tuesday, 28 June 2016

Nice appeal decision!!

We have a decision! It has taken almost 7 months, but NICE have decided that the appeal should be upheald. Not for the whole of the Dupuytren's community, they still prefer patients to have PNF but for those who are not suitable we can argue the case again. https://www.nice.org.uk/guidance/GID-TAG364/documents/appeal-decision So back to appraisal it is.
Anyone who wants to know what the decision was based on, this document gives the arguments and reasoning. And for someone interested in the whole process: the documents can be found here: https://www.nice.org.uk/guidance/indevelopment/gid-tag364/documents

On another note the Pulvertaft Hand Centre in Derby would like to know what patients feel about splinting, especially after PNF. https://www.surveymonkey.co.uk/r/splintingfordupuytrens  It is a short survey, so won't take much of your time! Go ahead and do it.

The Peyronie's campaign has reached a lot of people and countries, and we are now considering how to build on that. Our Thunderclap reached the 100 supporters-limit, thank you to everyone who supported! We will keep you informed of any other projects we start, for now it is back to appraisal on Xiapex and hoping NICE makes the right decision on Radiotherapy. Exciting times for Dupuytren's patients.

Wednesday, 15 June 2016

#StandUpforPeyronies




My name is David Ralph, I am a urology specialist and I see around 500 men with Peyronie’s disease every year.

In time I have come to realise what a challenging disease it is to deal with. First of all we need to encourage men to come forward as soon as possible. Don’t be embarrassed to talk to your doctor. Bring photos. Explain how it is affecting your life. The more we know the better we can help, and the earlier treatment can begin the better. The more we talk about Peyronie’s disease, the less stigma there will be surrounding it.
 
It is important to be referred to a urologist with specialist experience in Peyronie’s disease who is abreast of all the different treatment options – surgery can be effective but is not the only answer. There are lots of other treatments that can help. For men in the early active stage I personally recommend Cialis daily, Vitamin E, Pentoxifylline or Tamoxifen. Adding vacuum therapy using a device to stretch the penis may help at any stage of the disease, i.e. during the active or chronic stage. I also use Collagenese injections in some patients which help to break down the plaque. Doctors need to be made more aware about the multiple treatments that can be used in order to choose the best option for their patient.
 
Peyronie’s disease can affect patients mentally as well as physically. The research from the British Dupuytren’s Society shows just how common depression is amongst men with the condition. I have even had one patient commit suicide because of his Peyronie’s disease. We need to do more to get men with Peyronie’s disease the support they need to stop tragedies like this happening. I would like to see men with Peyronie’s disease feel comfortable enough to talk about their mental health issues, and to be referred for counselling if they want it.
 
I am delighted to support the #StandUpforPeyronies campaign and hope it helps men with Peyronie’s disease to get the treatment they deserve.
 
Dr. David Ralph BSc MS FRCS (Urol) is a Consultant Urologist at the Institute of Urology and Peter's Andrology Centre UCLH, London. He was appointed in 1996 and has built up the largest Andrology unit in Europe. Dr. Ralph divides his time between researches, teaching and clinical medicine and is one of the most experienced Peyronie's specialists in Europe.
 
He has published extensively on the subject of Peyronie's disease and the surgical and medical management of erectile dysfunction.
 
Dr. Ralph has been the President of the British Association of Urological Surgeons (BAUS) section of Andrology and British Society for Sexual Medicine (BSSM) and is heavily involved in the patient organizations of the Sexual Dysfunction Association (SDA) in the UK and its European equivalent ESDA. He is chairman of the Sexual Advice Association (SAA).
 
 

Wednesday, 25 May 2016

What is happening?

This morning I did a radio interview with BBC Radio Nottingham, who wanted a bit of information about Dupuytren's after interviewing a patient. We are trying to raise awareness!
NICE still have not decided on collagenase use, almost 6 months now. I'd love to be a fly on the wall in their internal discussions. They are also reviewing radiotherapy use, but that is a different group so maybe the decision there will come before collagenase?
Our thunderclap is going slow. We need more people to go to the website https://www.thunderclap.it/en/projects/41412-standupforpeyronies , click on support and allow the app to access your friendslist. All it wants with that is to calculate how many people will be reached: IF we reach 100 supporters by mid-June the thunderclap app will post a message on every supporters Facebook or Twitter feed (but NOT on your friends, don't worry!). So it does not cost anything, all it does is make people aware there is a condition called Peyronie's that is not something to be ashamed off!
The website keeps needing more work, links not working or information that is out of date. If you notice anything please go to Contact us and report it to Anna or Gary. We are updating the Peyronie's information (well, Gemma is- thanks Gemma for all the hard work!), so any problem on those pages also please inform one of us.
Meanwhile people look after your body, be gentle with your hands and feet and keep in touch with us!

Wednesday, 4 May 2016

Radiotherapy for Dupuytren's experience wanted, and video interviews for general awareness

Even though NICE has not decided on Xiapex use yet, they have now decided to review the guidance for radiotherapy in early Dupuytren's. So far it was limited guidance with any NHS treatment needing to be done in a centre where the results were special arrangements for clinical government, consent, and audit or research are in place. This has limited the number of centra willing to perform the treatment.
NICE now decided on a consultation where they want patient to fill in a questionaire, to help them decide if the procedure is safe and effective enough and if special consent is needed.
So we are looking for any patients who have had radiotherapy treatment and are willing to help, to start by filling in a questionaire, maybe at some stage one or two will be asked to come to London or Manchester for the appraisal if NICE wants to ask more questions (that is what happened with the Xiapex appraisal, but you can just say no if you can't come).
So please, anyone who had radiotherapy and wants to help try and make it available for more patients, contact me on anna@dupuytrens-society.org.uk , or via our Facebook page or group.
We are also still looking for people to do a video interview with SayCommunications on how Dupuytren's has affected their life, everyday tasks, work and / or hobbies, for an awareness campaign.
This will be to explain to doctors and the rest of the community that even if Dupuytren's is not dangerous it does need  treatment before a patients hands get really bad.
And of course we are still working on a campaign for Peyronie's, Dupuytren's little brother disease that nobody likes to talk about. But we will change that!
So if you want to help us with any of these causes, use my email, go via the website on the contact us page, go to our Facebook page.. get in touch!!