We have a new webpage, to help new patients especially. Let me know what you think. https://dupuytrens-society.org.uk/abbreviations-commonly-used-by-patients-and-doctors/
Keep up to date with all the news from the British Dupuytren's Society.
Monday 30 October 2023
Saturday 1 July 2023
Tuesday 9 May 2023
We had a Dupuytren's awareness day!
May 8 is International Viking Day, so the BSSH and the BDS together decided to jump on the bandwagon and declare a Dupuytren awareness day the same day, and post Tweets (and toots, and facebook posts) all day long. Here is a summary of what the BDS posted:
Today is Viking Day! And Dupuytren's is called "Viking Disease". But let's be honest, it isn't passed on by Vikings. So we can stop blaming the poor Vikings, and admit we don't know where the disease originated. Or why we get it.
Some recent research or study articles on Dupuytren's Disease research:
Dupuytren's and other diseases
Research with as yet no result
Collagenase replacement research
Viking heritage would not be all that bad! We like calling ourselves Viking Warriors, and the idea of decent personal hygiene is a plus as well!
BSSH training days on Dupuytren, charity presence. We have been promised a table in the hall where the BSSH does the Dupuytren's training in June. We will be able to introduce our charity to the next generation of hand surgeons! We are busy getting leaflets and other products printed and ready.
There are societies in many countries.The main organisation is the International Dupuytren's Society, and there are societies in Germany, the US, the Netherlands, Canada, Italy, Russia.
We are in contact with doctors in other countries such as Belgium, Argentina, and Australia Facebook, Twitter, Websites, Mastodon, blog We have a decent social media presence, and connect with a lot of people this way. We even follow people on LinkedIn, via a personal account.
We have a webshop on Teemill, with proceeds going to the Dupuytren Research Group, to support their search for a biomarker. We can easily add different designs and different garments to the shop, so if you are looking for something in particular, let us know.
There was a recent law change in the prescription of Dupuytren's as Industrial Injury -now far less people will be able to claim, and many will have to wait for treatment until the disease is advanced enough to claim compensation.This means they risk more pain and disability, and the result of treatment is likely to be less good, with more invasive treatments needed. We started a petition to show our concerns to the government
Viking pictures all original images by Hao Qin. Free to use under the Unsplash License, text added.
Wednesday 19 April 2023
Dupuytren's as Industrial Disease
Our reaction to the latest government changes in respect to Dupuytren's as Industrial Disease.
https://dupuytrens-society.org.uk/government-amends-dupuytren-contracture-recommendation-for-industrial-diseases-benefits/
Monday 6 February 2023
New Dupuytren video series starting on YouTube
One of the members from our Facebook group has started a series of videos about living with Dupuytrens at a young age.
Here is the first of those videos.
https://youtube.com/playlist?list=PLmj3PZBta8umXoweLqbQzSZpvCR296iPa
Saturday 21 January 2023
Please sponsor Julie
One of our members (who has Ledderhose herself) is going to run the London marathon to raise funds for us! We wish her all the best. To find her sponsor page, here is the link: https://2023tcslondonmarathon.enthuse.com/pf/jules-keen
We will keep you updated on her progress as she is practicing for the marathon.
Saturday 7 January 2023
Is Dupuytren's contracture a cosmetic problem?
Dupuytren’s surgery- elective or cosmetic, or necessary?
Some patients are being denied Dupuytren’s surgery because their CCG classes it as a "cosmetic" procedure, and therefore not offered on the NHS. This is a step down from "elective" even. So what is the difference?
‘Elective’ is any surgery that can be planned in advance. 'Planned' surgery would be a better name, as 'elective' gives the impression the patient can choose whether to have the procedure done or not, and in many cases there isn't really a choice; not if the patient wants to remain alive, mobile, able to live independently and to work.. And quality of life (and QALYs and ICERs are important in the decision making of what procedure to offer on the NHS), so these things should matter in the decision makings of the CCGs.
Elective surgery tends to have a medical indication.
In many cases elective surgery is needed to give the patient the ability to live a normal or near-normal life again, to keep working and be independent. Think of patients who need a joint replacement, in constant pain, unable to walk any distance if it concerns hip or knee.
Electives can be life saving, like cardiac bypass surgery or the taking of biopsies to reach a diagnosis. But also a condition that causes the patient mental health problems can (and in the opinion of many should) be classed elective, even if it is only to change appearance and not to increase body function.
Cosmetic surgery is not medically necessary except maybe for the patient's self-esteem. The patient chooses to have a procedure done purely to change their appearance for cosmetic rather than medical reasons.
Cosmetic surgery is optional, and not classed as "elective" even.
Plastic surgery is done to normalise appearance AND FUNCTION of the body part. https://www.ambrdfcs.org/patient-resources/cosmetic-vs-plastic-surgery/ Therefore plastic surgery by definition belongs in the "elective" group.
So where does Dupuytren’s surgery fall in this terminology?
Some CCGs are claiming Dupuytren’s is a cosmetic problem. Maybe it is, in the early stages. But that is not the stage when surgeons would operate normally anyway, the nodular stage is best not touched with a knife as you would risk exacerbating the disease.
What about at a later stage, when the finger(s) are starting to contract? Common guidelines are to operate at 30-40 degrees contracture at the MCP joint, or ANY PIP joint contracture. This is not only because of the problems these contractures will cause the patient, but also because the beneficial effect of surgery is greatest if done in those stages.
The problems Dupuytren patients experience everyday
At that stage, the patient will have functional problems. Gripping things, getting the hand in small openings (think purse, trouser pockets), wearing gloves (and cold weather is not good for Dupuytren’s hands- cold causes vasoconstriction causes poor perfusion, which is a risk factor in itself). Patients will be struggling doing their job in many cases, struggling using kitchen utensils, personal hygiene will become more difficult. Typing on a keyboard or using a computer mouse will not be possible anymore for some. Doing up buttons or tying shoelaces gets to be a problem. Looking after the (grand)children can become difficult, or even stroking them over the head with one or more bent fingers that poke rather than stroke.
Is this still a cosmetic problem, if it limits what a patient can do in everyday life, if the patient can’t open doors or a bottle of water, can’t hold the steering wheel of the car properly, can’t hold a toothbrush or use scissors to open a bag of pasta?
Dupuytren’s causes a functional deficit
Dupuytren’s is a functional problem, a physical condition that deteriorates over time, affects the use of one (or both) hands, and needs treatment. And that treatment in many cases is surgery. Performed by a qualified hand surgeon, to get the best possible chance of functional fingers again.
After all, being able to use your hands is not a question of cosmetics, patients want functional hands (or at least as much as possible) and will gladly put up with a scar or two if it means being able to put your hand (almost) flat on the table again.
That means Dupuytren surgery is plastic, and not cosmetic.
Some patients are being denied Dupuytren’s surgery because their CCG classes it as a "cosmetic" procedure, and therefore not offered on the NHS. This is a step down from "elective" even. So what is the difference?
‘Elective’ is any surgery that can be planned in advance. 'Planned' surgery would be a better name, as 'elective' gives the impression the patient can choose whether to have the procedure done or not, and in many cases there isn't really a choice; not if the patient wants to remain alive, mobile, able to live independently and to work.. And quality of life (and QALYs and ICERs are important in the decision making of what procedure to offer on the NHS), so these things should matter in the decision makings of the CCGs.
Elective surgery tends to have a medical indication.
In many cases elective surgery is needed to give the patient the ability to live a normal or near-normal life again, to keep working and be independent. Think of patients who need a joint replacement, in constant pain, unable to walk any distance if it concerns hip or knee.
Electives can be life saving, like cardiac bypass surgery or the taking of biopsies to reach a diagnosis. But also a condition that causes the patient mental health problems can (and in the opinion of many should) be classed elective, even if it is only to change appearance and not to increase body function.
Cosmetic surgery is not medically necessary except maybe for the patient's self-esteem. The patient chooses to have a procedure done purely to change their appearance for cosmetic rather than medical reasons.
Cosmetic surgery is optional, and not classed as "elective" even.
Plastic surgery is done to normalise appearance AND FUNCTION of the body part. https://www.ambrdfcs.org/patient-resources/cosmetic-vs-plastic-surgery/ Therefore plastic surgery by definition belongs in the "elective" group.
So where does Dupuytren’s surgery fall in this terminology?
Some CCGs are claiming Dupuytren’s is a cosmetic problem. Maybe it is, in the early stages. But that is not the stage when surgeons would operate normally anyway, the nodular stage is best not touched with a knife as you would risk exacerbating the disease.
What about at a later stage, when the finger(s) are starting to contract? Common guidelines are to operate at 30-40 degrees contracture at the MCP joint, or ANY PIP joint contracture. This is not only because of the problems these contractures will cause the patient, but also because the beneficial effect of surgery is greatest if done in those stages.
The problems Dupuytren patients experience everyday
At that stage, the patient will have functional problems. Gripping things, getting the hand in small openings (think purse, trouser pockets), wearing gloves (and cold weather is not good for Dupuytren’s hands- cold causes vasoconstriction causes poor perfusion, which is a risk factor in itself). Patients will be struggling doing their job in many cases, struggling using kitchen utensils, personal hygiene will become more difficult. Typing on a keyboard or using a computer mouse will not be possible anymore for some. Doing up buttons or tying shoelaces gets to be a problem. Looking after the (grand)children can become difficult, or even stroking them over the head with one or more bent fingers that poke rather than stroke.
Is this still a cosmetic problem, if it limits what a patient can do in everyday life, if the patient can’t open doors or a bottle of water, can’t hold the steering wheel of the car properly, can’t hold a toothbrush or use scissors to open a bag of pasta?
Dupuytren’s causes a functional deficit
Dupuytren’s is a functional problem, a physical condition that deteriorates over time, affects the use of one (or both) hands, and needs treatment. And that treatment in many cases is surgery. Performed by a qualified hand surgeon, to get the best possible chance of functional fingers again.
After all, being able to use your hands is not a question of cosmetics, patients want functional hands (or at least as much as possible) and will gladly put up with a scar or two if it means being able to put your hand (almost) flat on the table again.
That means Dupuytren surgery is plastic, and not cosmetic.
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