hi
does anyone know how i can contact fi brown, as judy on here has suggested i contact this lady as she may have information on how to try and get funding for having treatment in nantes, france.
or if anyone can help me with any info, unfortunately my gp is more than useless
andrea
Hi Chillijava
The information on these pages should help you.
nhs.uk/NHSEngland/Healthcar...
I hope this helps
thanks for that, i have already had a look at it and i am not sure which applies to me.
my gp wont help me and to be honest i find it all a bit out of my depth to understand
andrea
Not to worry Andrea, I will have a look at it later on and reply tmw as anything I post now isn't likely to make much sense!
I have had another look on there and there is a contact phone number and email. Just a suggestion but it might be an idea to email as someone from NHS England might be able to put it in a understandable way. I've been to one of their events last month representing this charity and they were all very friendly and approachable. I'm happy to put together an email for you if you would prefer? I will definitely re-read tonight the info on their webpages and get back to you tomorrow
hi thanks thats great, i have tried to ring nhs england before i went to france and whilst they were, as you say very helpful, they couldnt point me to which route for funding would be the best. i know a lot of people have very good gps to help tham, but although my gp is ok at being a gp, he doesnt go the extra mile, which is what i need now. i am happy to fund all of the cost myself, and lucky that my parents left me an inheritance, but most of that has gone now, mainly on private healthcare to try and solve my problem, i have had very little help, if any from the nhs, its about time i think they helped out some!!!!!!!!!!!
andrea
Alaine,i was asking if anyone currently doing decompressions in Uk as i believe the procedure needs to be available on NHS for funding to be approved?
Hi Barbara,
I’m not sure on this if I’m honest with you ask I suspect it will be rationed to those patients who have tried everything first before being allowed to try surgery. I know some areas for some types of surgery are shutting their waiting lists for many surgeries because of huge demand locally (something the nhs is allowed to do). I did find an information leaflet from the Royal Berkshire hospital dated from 2016 which is their most recent so I’m guessing in theory they are still offering the surgery but am not sure what their operating criteria would be. I’ve posted it below as there is some useful information numbers on there that you might be able to use to find out the name of the surgeon(s) who carry out the procedure as it’s probably best to use the name of a named surgeon. I will carry on having a look for you to see what else I can find.
I think with the funding the nhs can limit or not fund treatments unless individual circumstances dictate are i.e a patient has tried everything and given each treatment enough time to see if there is any/no benefit to containing. An example of this would be gastric band surgery which is now becoming increasingly harder to access.
I hope some of this helps for now
royalberkshire.nhs.uk/patie...
Thanks.isnt spinal decompression very different though to PNE decompression?does the comparison have to be identical?
I found this list on the pudendal hope site. There are a few specialists in the UK who practice it and who trained with the team in Nantes. Dr Greenslade though wasn’t taking any referrals from outside the local area due to restrictions placed on the them from the local NHS.
The comparison probably wouldn’t have to be identical although most likely very similar. Also it would also be taken into account quality of life, how much you can function on a daily basis, work etc.
hi,yes I've been on there before.i heard Dixon/greenslade doing,one suspended,one retired NHS.I saw wong somewhere,can't find again.I was referred 3 years ago to mr carlstedt but he was private too and did one side at a time.im not aware of anyone currently doing the surgery in UK and Nantes gave me a date today.NHS england have paid for some nerve blocks for me,are late as so busy dealing with my applications since Feb.I just wanted to be prepared with info when they come back to me as it'll probably be last minute.
alaine,thanks I've just reread,says greenslade refers for decompression.I see wong,i will try ring and find out tom
I think Most surgeons will probably be private for the surgery as it’s not routinely carried out. Many surgeries that were once carried out are no longer do - such as tonsil removal. Have to have so many separate episodes of tonsillitis per year. Let us know how you get on
my thoughts are..why in the UK is help so limited for PN.Is this surgery ineffective?too risky?too difficult?
I don’t think it’s harder than many conditions or techniques used to treat pelvic pain conditions. I’ve had to jump through many hoops myself for medical and surgical treatments. It’s probably due surgery showing very mixed results and when looked at statistically only a very very tiny percentage of people show any benefit which is why generally the nhs won’t fund it for everyone. But if you’ve tried everything it’s worth pursuing even if it means having to retry some of the medical or physiotherapy treatments again in order to satisfy any conditions they impose before agreeing to fund surgery.
Hi Chillijava
Ok I've had a look at the funding as id previously looked for myself as I'm waiting for an appt to be seen in France myself but needed to refresh my memory. There are two different routes: the S2 and the EU directive route. The S2 route states that before any treatment is carried out you will have been given funding to cover the cost of your treatment from the nhs. But you might have to pay part of your costs as some countries require the patient to make a contribution to their healthcare costs. This is usually set at 25% so you may need to pay a few thousand pounds upfront and then claim this back when you have returned to the UK. There is an email address on the page as to where the claim needs to be sent. In other countries the government pays 100% of healthcare costs for their residents so you wouldn't need to pay anything out of pocket but you would still need to take all of your documents stating that your care is being paid for by the nhs. NHS England will provide you with an S2 guarantee form which you hand to the medical team in France. To be eligible for the S2 route you need to have written evidence that the treatment is necessary, the information that is required is on the link I gave you and is under the heading compare funding. You could ask both the GP and the consultant in Nantes to provide written evidence that the treatment is necessary. But if the consultant in France writes the report in French the responsibility is yours to provide the translation in English. This as far as I'm aware isn't a cost that is covered by the nhs.
The second route is known as the EU directive and is similar in some ways to the S2 route but does have some very important differences. If you fulfill the criteria for funding you would be allowed to pay for treatment abroad and then apply for reimbursement once you have returned to the UK. One of the important differences is that you are only allowed to buy treatments that are the same as treatments that are available on the nhs unless there are exceptional circumstances. With this option you will in most cases have to make all payments for treatment upfront which can be expensive and in someways risky as you may not get all your money back. You can under this route ask for your treatment to be preauthorised. Whether you pay upfront then claim or get preauthorisation you will need your consultant or GP to provide a letter stating the treatment type, condition if already diagnosed etc. Again the information on what is required in the letters is under the same compare funding routes - EU directive heading on the previous link I sent you.
The information on the link does look very confusing but I have only done an overview of the main points for you. The main things you need to consider now are what route for funding are you going to take and who will provide you medical letters - I'd personally ask both the GP (mines useless too) as he will provide any aftercare to you if you get an infection post surgery and the consultant in Nantes. That way you have covered all avenues. It maybe that you request a meeting with the GP after the surgery closes for lunch as you need to discuss funding for treatment via the nhs which will take up longer than the standard 5-10 minute appt slot. You could even ask to speak to the practice manager and ask for their help in setting this appt up. Some practice managers are actually very good and it maybe they have experience or a good level of knowledge of applying for funding
If it was me (this is in no way me telling you which route to use for funding) I'd use the S2 route as it seems a lot more straightforward and the nhs will cover 100% of costs. Again I hope I haven't waffled on but if something isn't clear or you need any further info please feel free to ask
thanks sooooooooooooo much for that, you would think there would be an easier way to sort it all out.
i am going to ring my surgery and see if i can get in to see my gp before i do anything else and then i will email professor robert and tell him my decision. he is very nice and speaks super english, he has given me his private email, as his secretary doesnt speak any english and told me to contact him when i have made my mind up.
its a no brainer really, i have got to give it one last shot with the surgery.
i was thinking of having the surgery jan/feb 2017, this would give me time to get funding, or save the money to pay if i have to do this myself. i also am waiting for an operation on my wrist as well, but knowing the nhs it wont be in the next 18 months.
i am 60 next year in the spring and i wanted to go away, so i also want to have a holiday before the sugery
i will let you know how i go on when i see my gp and also contact you again if thats ok
andrea
That's not a problem, glad I could help! I'm pleased you had already made up your mind you need the surgery as it does make life easier even if having the hassle of sorting out funding. It definitely makes life easier when they speak English although I'm sure getting it translated wouldn't be too difficult as I'm sure there are people who'd be happy to help. Jan/Feb definitely sounds like a reasonable time frame to get all the funding in place and any other info they might require
Yes please do get in contact after you've seen your GP and I'm happy to help in any way I can. I check the messages several times a day along with Suzanne. Both of us are always around even if we aren't posting on messages. I look forward to your update 😊
great, i must admit last week we had some very funny moments trying to make people understand, but even if they couldnt we found all the people of nantes, polite and helpful. most of the doctors spoke a little english, some better than others but dr levesque who is taking over from dr labat, is lovely, also prof robert speaks super english
i think my plan of action is, to see my gp first and see if he will do me a report and help to try and get me some funding, then i will contact prof robert, and tell him i am going to have the surgery, ask him also for a report to support my claim for funding, how long i will be in hospital, the after care etc and also the cost.
thats my plan to maybe a new freedom, it would be lovely to have some independence back and drive again
andrea
well i have hit my first stumbling block, no doubt this will be one of many, my gp has said he is not interested in helping me as he doesnt know how to go about it, the practise manager is trying to help but also has no experience either.
i keep trying to ring nhs england, and no one is answering, it goes straight to answer machine, asking me to leave my details, but no one ever gets back to me, i have tried emailing them, again no one gets back to me
any ideas of what i can do now
andrea
just to let you all know that if you are trying to contact the nhs england team about funding, then you will have a long wait. i keep leaving messages for them to contact me but no one returns my calls, quite appalling really, but only what i have come to expect from the nhs. you think they might have the courtesy to return calls
What do you think of this ?
What is wrong with me????
an antenrior repairand vaginal hysterectomy
Pudendal neuralgia burning pain 
Adhesions discovered by laparoscopy 
