| Needle Aponeurotomy in the UK |
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08/02/2006 23:09
Trevornot registered
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08/02/2006 23:09
Trevornot registered
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NA at NHS
Hi Marjorie, re
"I have today received notice from the Healthcare Commission that my request for funding has been rejected. I am in the process of compiling all my data to send to the Health Service Ombudsman. I have spoken to someone in that department today and they are willing to look at my case.
I have written a letter to David Cameron and that will be in the post tomorrow"
I hope that you mentioned the information provided by Wolfgang (24/7/06)
Wolfgang - "unfortunately it seems that there are not too many alternative treatments available within the UK. Though we know of a case where someone has been treated at a NHS hospital with NA this is not a standard and the doctor refused that his name is published, although the NA had excellent results"
If the NHS has indeed allowed this the it should be possible to find out the details under Freedom of Information? Patient information is easy to remove from the data and there is no reason for them not to release. If they do then appeal the decision, firstly with them and then further up the chain if they refuse?
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08/02/2006 23:40
Wolfgangnot registered
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08/02/2006 23:40
Wolfgangnot registered
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NA at NHS
I doubt whether that was a NHS approved NA and I don't think that persuing it will get us any further. It requires official blessing by NHS. If Charles Eaton's session at the ASSH conference gets high visibility and acceptance then this might provide reason to ask NHS to re-think their position.
Wolfgang
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08/02/2006 23:26
Jamienot registered
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08/02/2006 23:26
Jamienot registered
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Duyputren~sq~s
Either it happened or it didn't, in which case they have to disclose if it did?
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08/17/2006 23:09
Marjorienot registered
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08/17/2006 23:09
Marjorienot registered
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Dups!
Hi Betty,
No, we are not getting anywhere with NA in the UK. Many of us have been trying but no joy so far.
There are practitioners of NA closer than Nice but you will have to pay to have treatment. I have applied to my PCT for payment but they turned me down. I appealed via the Healthcare Commission but they turned me down as well. At present my appeal is being dealt with by the Health Ombudsman but I am not holding my breath.
I have twice been to Paris for NA and am going again next month. I live in the NW so have to fly there so I stay for a few days holiday. If you live within easy reach of Eurostar you could possibly do the deed in one day so that you would only have the transport and treatment to pay for.
There are three treatments available: full surgery, simple fasciotomy and NA. Full surgery is invasive, debilitating for weeks or months and can result in nerve or tendon damage. Simple Fasciotomy is surgery but, small cuts are made in the hand/finger and the 'cord' is then cut. NA is where a needle is used to anaesthetise the skin, the same needle is then used to break up the cord, this is repeated in as many places as necessary, usually three. The finger is then quickly pulled to break the cords and, hey presto, the finger straightens. It sounds painful but the only pain was from the anaesthetic. How straight depends on many factors but mine was brilliant. Dupuytren's does return and how quickly depends on the person. It is a year since I had mine done but I would rather have the needle any time. Some people go for years without needing further treatment.
Ask if you want more info.
Marjorie
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08/20/2006 23:56
Bettynot registered
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08/20/2006 23:56
Bettynot registered
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Dups!
Hi! Marjorie - thank you for your remarkas inreply to my message - only just got on line again! It is as I thoght about the op - I really do not fancy it as I imagine it would cut me off from my comp. and stop me driving for some time! I said Nice because we know it very well and do go there (although money is now getting a bit short for our jaunts and my husband suffers badly from arthritis and cannot get about too well!) I wonder if you have seen something I found on the web? It was published in Feby.2004 NHS in top right corner, and called Interventional Procedure Guidance 43 - website www.nice.org.uk (not Nice France!)- acronym for National Institute for Clinical Exceellence. It seems to agree with the treatment by NA! May be of use in claiming repayments! I shall probably take it to my Doc. and ask him about it. Regards BB.
PS - I am in North Yorkshire!
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08/20/2006 23:22
Bettynot registered
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08/20/2006 23:22
Bettynot registered
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NA
Hi! Marjorie - again - further to my message below I have now had another look at the paper I mentioned and realized it is talking about the other needle procedure of more or less cutting through the bands! I think this is what my eldest son had (unfortunately, he died 18 months ago). I have since spoken to a cousin twice removed and he says that his grandfather had a badly clawed hand - so I guess it does pass down in families - mine seems to be particularly prone! However, we are not a family with any of the things it is supposed to be related to - alcohol, diabetes, liver etc. I do wonder though why, if they are using a needle as described in the paper I mentioned, why cannot they use it further to do the NA op??!!! Regards, BB.
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08/20/2006 23:32
Marjorienot registered
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08/20/2006 23:32
Marjorienot registered
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Paris
Hello again Betty,
In response to your query about NICE. Yes, I know all about it and have tried to get a refund for my treatment in Paris. I started with my Primary Care Trust, they turned me down. I then asked the Healthcare Commission to look at my case, they turned me down. I am now having the Healthcare Ombudsman take up my case but I do not hold out much hope.
It is a pity that you do not live in an area of the UK closer to the Eurostar as it would be difficult for you to travel, have the procedure and then return home in the one day. I have known people go from Manchester on the first flight and return home in the evening.
I actually travel to Paris from Leeds/Bradford. This is not my nearest airport but the flights on Jet2 are sensibly timed at 11-15 to Paris and arrive back just before 3pm. I make a holiday of it and stay for four nights. You could do it staying for two nights. I buy a five day Paris Visite Pass which allows travel to/from the airport, out to Gagny to see my doctor, spend a day in Versaille, go to Disney and on the bus train and metro around Paris. It saves having to wait for tickets, find change etc.
Hope this helps,
Marjorie
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08/21/2006 23:56
Bettynot registered
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08/21/2006 23:56
Bettynot registered
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Paris
Hi! Marjorie -thank you for reply. Yes, we have done the Paris bit from LBA - we are only 20 mts. away (HG1). How much is the charge for treatment - the Euro seems pretty favourable at present. Did you stay in centre of Paris or near the airport? Unfortunately, my better half cannot walk too far these days! I'm OK - no problem - walked up over the Cow and Calf this a.m. Nice we find is OK- easy for the buses and they take you to the train station! We have just splashed out on a new car so are feeling the pinch a bit at present! Plus, another grandson (we have 12 - girls and boys equal - of them) is just starting out at Uni - Geology - and has been told he needs several expensive geology kits (not cheap) and money for two "expeditions" to start with!!! Guess whose promised to buy him one of the kits!
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08/21/2006 23:06
Marjorienot registered
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08/21/2006 23:06
Marjorienot registered
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digit widget
Hi Betty.
This is the web page for all the doctors in Europe who do NA.
http://perso.wanadoo.fr/f.badois-dupuytren/html/liste.html
I have not heard of the one in Nice but if you ask on the forum someone may have news of him. Perhaps Nice would be easier for you but you will have to decide.
I stay at the Hotel Terminus Nord which is opposite the Gare du Nord station. It is easy to get from there to the places you want to be. I know that many of the doctors work at the Hospital Laraboisiere which is walking distance from the hotel. You will see this on the web page. I go to Dr Lermusiaux's private rooms in Gagny, A 15/20 minute ride from the metro station at the side of the train station. There is a walk of about ten minutes when you get off the metro. I only know the cost of Dr Lermusiuax's treatment at his private rooms, not how much it would be at the hospital. Put it this way, the cost of the treatment is not a worry.
The hotel is probably the most expensive item. I book on Jet2 for flights and hotel and don't think it is too bad. There is no point in staying near the airport as one needs to go into Paris to go out again to a different part of the city and surrounds, nothing seems to join up like it does at home.
I know what you mean about the grandchildren. My eldest has just passed her A levels and has a place at Man Uni, costing me a fortune.
Hope this helps,
Marjorie
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