NO HOPE OF PUDENDAL NERVE DECOMPRESSION SURGERY ON THE NHS IN THE UK

hi

i havent been here for a while been really busy. some of you may know that was going to nantes in france this month for decompression surgery for my pudendal nerve entrapment, the date was set for the 26th january, but due to unforseen circumstances, i no longer have the 5300 euros for the operation.

i had also applied to nhs england for funding for the procedure, but again, they will not fund the operation, the reason being that they do not do this surgery on the nhs.

what i find very strange is if you go into the nhs website and type in pudendal neuralgia, it comes up with information about this condition and treatments, if you look at the treatments for this condition one of them is decompression surgery!!!!!!

why say it is a treatment for the problem, if they do not offer it to you, i really cant get my head around it, so much so i have asked my mp to look into it for me

andrea

28 Replies

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  • So sorry to hear this has fallen through. It's soul destroying to have your options taken away. I agree about NHS choices website, shouldn't be on there if they don't provide it!! Bristol have put in a funding application in for decompression surgery for me. I will let you know of the decision (hopefully in the next few weeks). If one case is successful maybe it can pave the way for others.

  • that would be helpful to know, as nhs england told me its not just my ccg that wont fund it, none of the other ccg's in the uk will fund it either, hope you are luckier than me

    andrea

  • Oh so sorry to hear of your plight Chillijava, I read the NHS web page that you mention and it does say decompression surgery on there , also if they do not fund it how comes mr Dixon ( does the actual surgery) with dr Greenslade in Bristol , and that is on the NHS!!!

    So they are fobbing you off, if I were you I would research on the web info on dr Greenslade and the surgeon mr Dixon and print it off and send it all recorded Royal Mail ( so they can't say they haven't received it, and point out they are incorrect in what they have stated to you!!)

    Really with my fibromyalgia and bum pain I am not really well enough to travel but somehow my boyfriend is getting me to see prof Robert in Nantes this year , hope you don't mind me asking did you have to have a referall letter from your g.p to go and see him ( I will have to pay with my own money as I have no medical insurance )

    Also how on earth do you get hold Of Judy birch? I cannot seem to get hold back of her, tried 4 times last year to no avail ☹️

    It is awful we have to suffer like this , animals at the vets get treated with more dignity, don't they? If you ever want a private rant feel free to private message me!!

  • hi

    thanks for your reply, i do know of mr dixon and dr greenslade as they diagnosed me in at the beginning and i had decompression surgery with mr dixon, (privately), without any success, i have also now involved my mp who has been very helpful and he is looking into it for me.

    prof robert and his team are lovely and very caring, so you can go there with confidence, i too have fibromyalgia.

    are you flying to nantes, it only takes 1 hour and is very easy, if you fly with flybe, they are very helpful with the arrangements for travel assistance passengers.

    you do not need a referral letter to see prof robert or his team and yes judy can be quite difficult to get hold of she is busy, busy, busy!, but she will always get back to you

    if you need any more info. please email privately and i will help if i can

    andrea

  • I applied to the clinical commissioning group in the South West and got funded and had surgery in November 2015.

    It may have helped that I am a veteran and it could have been linked to an old injury.

    Am 70% better since surgery but progress is slow

  • thank you most helpful

    i can now contact nhs england and tell them they are liars!!!!!!!!!!!!!!!!

    andrea

  • My surgeon was Mr Wong at Southmead Hospital and Consultant Dr Greenslade in pain clinic there.

  • Did you have surgery at Southmead or The Spire? Thanks.

  • Spire paid by nhs

  • Sounds hopeful for those needing the nhs to pay for the surgery

  • i had it at the spire, paid for by my health insurance

    andrea

  • great trevor thats so helpfu, i have just emailed my mp with the info, if i need to can i get more info from you

    andrea

  • Yes, okay, not much to tell. Diagnosis took years and I have a 71 year old pelvis...

  • i was interested how you managed to get funding for the surgery when nhs england have told me it is not available on the nhs

    andrea

  • Hi

    I think it's like many conditions unfortunately that doesn't get funding. Some hospitals get given the funding- an example would be sacral neuromodulation and UCLH but if you were to have it done at another hospital where each case has to have funding applied for then funding is usually denied even with a very strong application from the consultant carrying out the procedure. I'm not sure if you've already mentioned it but are you having the surgery with the Bristol team? I agree the system isn't always fair but I myself have had to be referred to another hospital in London UCLH to have my bladder removed and reconstructed despite my surgeon at Barts being trained and having carried out the procedure numerous times as the nhs likes to have Centres of Excellence in some conditions/procedures. It also might be for your own benefit as consultants/surgeons carry out these procedures on a regular basis tend to have fewer complications or are better advised to know when a surgery shouldn't be carried out due to risk of failure or added complications. So are you hoping to get the surgery funded in Nantes? I hope this helps

  • i have already had surgery under the bristol team which was unsuccessful, paid for this privately , i have also been to see prof robert and his team in nantes, again paid for it myself and was offered surgery again with them, but cannot afford this again, so applied for funding on the nhs which was refused as i was told this surgery is not available on the nhs, but i have also found someone who has had the surgery on the nhs in bristol

    andrea

  • Hi Andrea

    I remember you posting last year about funding of treatment via the nhs. In your original application did you include a letter from Prof Robert? It's just usually applications need to have supportive evidence attached and he would be able to provide the rationale behind this surgery. I did see the reply from Trevor about surgery on the nhs but I'm not sure if the fact he was a veteran might allow a different set of criteria to be used?

  • yes i did send everything they sent me from france, which included a letter from prof robert, but they still declined the funding and their reason was that the surgery was not available on the nhs, so if i can prove other people had surgery on the nhs i cant see how this decision would stand up, i cant honestly see how being a veteran would make any difference, if one person gets the surgery why cant others

    andrea

  • I agree if it's available to one then everyone should have it but I think I saw he posted it may have been caused by an old injury from when he was deployed so there would be a need on the nhs to treat this. I know it doesn't seem fair at all but this is often seen with cancer treatment- how are some people seen to be more deserving. I'm trying to think of ways to strengthen your application- is there a way to appeal a decision?

  • well i have tried and they told me i could send in an ifr (individual funding request), normally its your gp, but i know without asking my gp would not do this, as he thinks i should get on with life and stop searching for answers, the only person who i think could possibly do this for me may be my pain consultant, i am going to ask when i see him in ferbruary.

    i the meantime i have sent all the info from trevor to nhs england as they said they needed to see this before they could look at my case again

    andrea

  • It probably doesn't seem like good news but I think the fact that you're under the care of a pain specialist adds wait to your application and in many cases probably has a better understanding of the procedure rather than your GP. Good luck with your application and I hope you will keep us all updated on the outcome

  • Hi, so as I understand it, you had an unsuccessful PNE surgery at Bristol but now you are trying to have repeat surgery as an NHS patient? Would that be at Bristol again? Did they tell you at Bristol that your nerve was entrapped ?

  • yes my surgery was done privately at the spire hospital bristol, onthe left side only, after going to see prof robert privately last september, he wanted to re-due the surgery but this time both sides, which again i would have paid for myself, but unfortunately i had to spend the money i had saved for the surgery, so i am trying to get this repeat + surgery on the nhs.

    but this avenue has been closed for the moment unless i can prove that the surgery is done in the uk on the nhs, i have also been advised to apply to my local ccg for an IFA(individual funding application) for the surgery, which i will be doing when i have been to see my pain consultant on the nhs.

    if i cant get the surgery in nantes i may consider having the surgery in bristol again, but this time on the nhs, but if my IFA is successful, then you allowed within reason to have it overseas and they will fund the surgery upto what it would cost on the nhs.

    after my last surgery, i was told that it was a very tight space inside, but thats it really.

    the problem is where the trapped nerve is, until you are opened up there is no way of knowing, so it is a bit hit and miss

    andrea

  • Well done.

    If you get no joy with the MP, why not take your story to the newspapers.Its your life you're fighting for.

  • well i have come to a dead end with my mp and have just spoken with my ccg, who have confirmed that they will not fund the surgery, but have suggested that i ask my pain consultant to send in an IFR on my behalf, they have also confirmed that if my IFR was successful that i could have the surgery in france if i paid for my own expenses and that it was no more expensive than having the surgery on the nhs, the problem is now trying to convince them the my circumstances are "exceptional", surely we all are exceptional, i wont hold my breath though as she said the problem is if they say yes to me it will open the flood gates, well bring it on , i say, lets all go swimming together!!!!!!!!!!!

    andrea

  • Good luck with your application and I hope you are successful! Let us know how you get on

  • thants really great for you and i envy you, but we are talking nhs here and i dont think for one minute they would fund this, unless you had it on the nhs

    andrea

  • I don't think this kind of treatment is available in the uk.

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