Do you have to pay for treatment

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I've just been diagnosed with hfs and my doctor has told me that I will have to pay for Botox treatment as the nhs will not fund this . Has anyone else been told this ? And how much does it cost? 

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14 Replies

  • Posted

    Hi Ann

    I'm assuming that you are in the UK, is that right?  If so, then your doctor is way out of order in telling you this about NHS and Botox.  I certainly had Botox on NHS, but they will only inject the affected side of your face.  This can make your face a bit wonky if they inject anywhere other than round the eye area.  Hope you have also discovered the Hemifacial Spasm (HFS) Support Page on Facebook.  Lots of UK members who can tell you more than I can.  There is also an International Facebook Group and they have lots of information in their FILES section.  I believe there's also a Yahoo Group but I am not a member of that.  

    I would definitely advise you to challenge your doctor on this Botox payment idea.  I'd also suggest that you ask to see a neurosurgeon and get an MRI scan to confirm diagnosis.  I live in south of England and had successful surgery in Bristol (on NHS) last year.  My name on Facebook Group is Angela Bond.  Please send me a private message there if I can be of any further help to you.  Wishing you all the best.  

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    • Posted

      Hi roseann thanks for your reply  as yet I am waiting for an appointment to see a specialist as I was only at my doctor on Monday  hopefully they will have different outlook on treatment but I do think my doctor is wrong for saying I have to pay privately  for Botox injection  . I assume my referral from doctor is to see a neurosurgeon but not sure 
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    • Posted

      Hi roseann  I do live in uk just down the road from you ( Torquay) have worked since leaving school paid tax etc . Cannot understand why doctor is telling me I have to have treatment privately  . I am 59 years old no longer work so cannot afford this really. I will challenge my doctor if needed ,maybe specialist will tell me more . thanks for your help much appreciated
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    • Posted

      Hi again Ann.  As you live in the West Country I would strongly advise you to ask your GP to refer you to Nik Patel at Southlands Hospital in Bristol (if you would ever consider having surgery for your condition).  I only know of one person who has had surgery for HFS in Plymouth - successful but with some hearing loss.  I believe she lives in Devon, possibly Torquay!  She is on the Facebook Group and her name is Lynn W-P (will not write in full as she may not wish me to).  I am sure she will be able to advise you about Botox too - she is a lovely lady.  Your doctor is definitely ill informed about Botox treatments because I have not heard on one single person who pays for this treatment.  HFS is NOT a cosmetic condition and that is definite!  By the way, I had HFS for 9 years before biting the bullet and having surgery.  I was 62 when I had it this time last year and it was the best thing I have ever done.  Nik Patel in Bristol seems to be acknowledged as an expert in this field and definitely the expert in your area of the country.  I live near Winchester in Hampshire and there are quite a few of us in southern England with this condition/recovering from it.  Please do let me know if I can be of any help to you.  I felt so alone with HFS when I had it for all those years without knowing there were support groups around to help.  Take care and good luck. x
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  • Posted

    Hi,

    I have also had botox for the last 4yrs from Dr Damien Wren at St Georges Hospital thru nhs.Just need your dr to refer you to a neurologist who does it in your area.Certainly if you see a neurologist first he will organise an MRI to confirm diagnosis and then will advise you of your options

     

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    • Posted

      Hi there,

      I too have Botox injections at St George's but with Dr Huda who I thought was the only person doing the injections there. I have approached my GP about having an MRI (she seemed to think I may have to pay for that) and am waiting to hear. I have not seen a consultant in all the six years I have been having treatment. As it seems to be spreading down the left side of my face and as I don't want to have Botox for the rest of my life, I am hoping to have the MVD surgery. What is your position? Are you happy to have Botox for ever?

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    • Posted

      I first was sent to a neurologist by my gp for diagnosis and he did mri.he reccomme ded medication (tegretol) or surgery.i opted for medicatiln which didnt help and made me feel flat and sick.i heard of botox and went privately initially to see dr Marion and  once I had had 3  treatments with her my insurancewouldn't pay any more so I was sent to Damien Wren a neurologist at St Georges and he has bee  giving me my botox for last 4 years.i feel it isnt working as well and Dr Wren was happy to refer me to Henry Marsh neurosurgeon at St Georges who does mvd

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    • Posted

      Hi nick I have now had a referral letter to go see specialist at hospital so hopefully I will be sorted out there  I have had a few people saying they did not need to pay for Botox  so will wait and see what the outcome of that matter will be thanks for your reply  will keep you posted of my progress  it is reassuring to know I can ask other people who have had this condition about  it  once again many thanks for your reply and time 
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  • Posted

    Hi Ann,

    I would second Roseann in suggesting you challenge your doctor. I have been having Botox on the NHS for HFS for six years at St George's Tooting. There was never any question of paying for it. All best, Sally

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    • Posted

      Hi Sally thanks for your reply I don't know why my doctor has told me this if it isn't right  but I will query it when I see specialist at hospital. I have had referrel letter to see someone at hospital now just waiting on a date   Many thanks for your for your help  I don't feel so worried about it now  Ann 
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  • Posted

    Hello Ann

    I have recently been referred for botox injections at a hospital not in my area, having my first injections nearly three weeks ago, i asked if i had to pay and was told no its all covered its part of my treatment. 

     

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    • Posted

      Hi Claire thanks for your reply I shall query this when I see specialist just waiting for a date to see one. Can you tell me if the injection was painful ? How do you feel after  ? ,
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