i was diagnosed with a medium sized tumor about 3 months ago, like many others i have read i was told in a very matter of fact way, i was told i would be referred to Birmingham & this is where for me things became frustrating, the referral took 3 weeks to be sent, a month later i was told by the Birmingham consultants secretary the referral had been received but he had been to busy to look at the letter or my MRI images & today ( another month+ later ) i found out again from his secretary that he replied to my local consultant 4 weeks ago & would be adopting a wait & see approach. i then rang my local consultants secretary to be told a letter was on its way for an appointment in 6 weeks time. As i said i have a medium sized acoustic neuroma its pear dropped shaped about 27 mm and is starting to impact on the brain stem or at least this was the case 3 months ago.
my question is this really, will going private change my treatment options ? i don't want to wait, i don't want to live in this limbo, i have a fair sized tumour and i want positive treatment, i am lucky enough to have use of if i need it private medical insurance. Does anyone know or have experience of changing from NHS to private ?
would really appreciate some advice
Thanks
Written by
DB1965
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I am really sorry to hear about your experience, and understand how you are feeling, as I too was referred to Birmingham, and became frustrated with the time it took to see a consultant, but although I am a member of BANA, I can't remember anyone being told the consultant's opinion without even meeting him. I asked to be referred for a second opinion in Sheffield, & paid for a private consultation there, which led to GK treatment six weeks later on NHS, as I don't have private medical insurance.
Are you a member of BANA? If so, it would be worth posting on the BANA forum, as I know there is at least one member who had private treatment at the Priory Hospital, in B'ham in the last 18 months, who I'm sure would respond. BANA was my lifeline following diagnosis.
Very best wishes, I hope you can find the advice you need very soon
So sorry of your frustration. I had a similar issue, referred , 2 months later they have not looked at the scans, 3 months later I had a letter to say they are busy and will see me in january- 3 months away. I searched the Internet and found a specialist in Cambridge, bought copies of my scans from the hospital. Made private appointment . In my case he also did not think treatment was needed, however, found that my dizziness was caused by something else. Treated that. Back to AE he took the SAME approach as the rest! I think they hope we die before teatment becomes neccessary. Still have AE being scanned regularly.
I had the option of going private when I was diagnosed in 1987. I took the option and travelled from Cornwall to Oxford for the procedure because there was no neurosurgeon in the county to carry out the job at that time. I ended up with a nine hour option which Bupa fell short of covering. I should point out the surgeon found two more tumours to remove once inside my skull. Like you my diagnosis showed the tumour to be impacting on my brain stem blood supply so the surgery was deemed fairly urgent.
Post option bios were not interested in continuing my cover which you need to consider. Best of luck, get well soon. Keith
Thanks for taking the time to reply & share its appreciated as my health insurance is corporate covering existing conditions there shouldn't be the same issue for me
After going deaf in one ear and having an MRI, I was referred to a consultant at Addenbrooks for disgnosis. As I have Private health cover, I asked to be referred using this and everything has moved fairly quickly. When my balance got a bit worse after 9 months on Watch and Wait, I got an extra MRI scan that I don't think I would have got on the nhs. This showed that the tumour was growing and I was referred for surgery. My appointment also came through more quickly than it would have on the nhs, within 4 weeks. That is where the differences ended! My appointment was meant to be 4 weeks ago and 3 days beforehand, it was postponed for 7 more weeks. When I went for my original pre op, I asked about the differences of going private at the hospital, and was told there were no differences what so ever. Therefore, you may get answers quicker by using it but final treatment may be the same. Hope that helps a bit
Sorry to hear of your frustration. I had a similar waiting issue on the NHS and so I used my BUPA insurance provided by my employer. I had two fantastic consultants in Birmingham, Richard Irving ENT and Andrew Kay Neurosurgeon - I saw them at The Priory and can't thank them enough for their fabulous work. I had one of the worst ANs they had ever seen but I am recovering well with minimal facial palsy (also thanks to Sally Glover, Facial Physio) I had an 11hr operation and high blood loss last August but am sure I will be back at work soon and I put it down to their absolute skill and professionalism.
@DB1965, I private at the BMI PRiory in Birmingham under Mr Walsh and his colleague. No complaints whatsoever and from memory it all went pretty quickly from me first seeing him privately (I first saw him on the NHS at QEM Birmingham). I posted in more depth a while back about my 'history', so will dig out that post and cut and paste it on to this thread to save you having to plough through things to find it.
"I live near Stroud and work in Cheltenham. I was referred to both Bristol (by the ENT consultant I saw at Emersons green NHS centre) and to the Birmingham (by my GP, who'd had past dealings with them).
Bristol totally messed up my initial appointments (they sent me to the wrong hospital on the wrong day and at the wrong clinic time...!!!), so I removed myself from that list and continued with Birmingham.
I initially saw Mr Walsh on the NHS in Birmingham who I found to be a top, top guy. Very easy to deal with, patient and understanding. As I;m lucky enough to have private medical cover through work with covered AN's, I went private with him at The Priory Hospital in Edgbaston and had my AN removed there in December 2012.
I've seen both him and the other surgeon involved in my treatment there several times since for standard check ups an the like, and have no complaints whatsoever.
Whilst The Priory is not directly accessible by train, the Queen Elizabeth Hospital in Birmingham is, which I have found to be very helpful for the times I've been there, particularly before my AN was removed and in the latter stages it made sudden head movements sometimes uncomfortable.
It's of course up to you, but I'd see if you can see a couple of people. After all, this is a big thing for you and you'll doubtless feel more comfortable on your 'journey' dealing with a team of people you develop a good
Feel free to contact me direct if you want to chat further on this. I believe you will be able to send me a driect message through my profile here.
I am actually from the Isle of Man and after looking into it Birmingham is quite difficult for me to do as a day visit, plane gets in at 10am and leaves around 2pm so i can see the need for a overnight so not just flight costs but hotel costs as well, i wonder if i should perhaps look at another location for treatment to go private to
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Has anyone been treated by Mr Nelson at Frenchay, Bristol? If so how long have you had to wait for an appointment from initial referral?
AN newby...
Just found out about my AN
New to all this and looking to reach out to others and stop using Dr Google!!
Headaches and nausea - what do you do? 
