Can anyone recommend an NHS urologist for bladder/UTI symptoms in London?

[dazedandconfused2016]

Hello,

I hope someone can help. I've been suffering since June with UTI symptoms.

The lab results in June showed evidence of an infection but I've had two or perhaps three episodes since with no infection identified by the lab.

I'm worried about losing my job as I have to go off sick when these symptoms strike and quite frankly I feel almost suicidal when I have an episode because whatever "it" is, I can't get rid of it. I get some respite for a couple of months after antibiotics then it's back.

I heard about a doctor who specialises in this problem, James Malone-Lee, and I got a GP's referral to his clinic only to be told that they are not taking on any new NHS patients.

Does anyone else know of anyone on the NHS in London who is good? I would really appreciate your recommendations. Thanks

[Ilovefluffysheep]

Westmoreland Street in London is part of UCLH, and a specialist urology hospital. You should be able to look it up and see all the consultants there and what there specialities are and get a referral. I've been under UCLH for years for my bladder/

[VivaLeBeaver]

I see Prof Malone Lee and I believe he’s very close to being allowed to accept nhs patients again.

[VivaLeBeaver]

Your problem is afaik there’s nobody else in the U.K. using the same treatment plans and having the same ideas as Prof. When he was temporarily and suddenly stopped from running his clinic we were all dumped without medication and no treatment plans as nobody else does the same. Literally everyone else says if the MSU shows no infection then you have no infection so “go away and stop thinking about your bladder” as I was told by my local nhs consultant. Prof is adamant I have an infection and have had it for years.

[VivaLeBeaver]

Have asked on a bladder support group I’m a member of

Apparantly Prof no further forward with new nhs patients. Sohier Elneil At UCLH is recommended if you need nhs.

[VivaLeBeaver]

www.chronicutiinfo.com/intro-key-info/treatment-uk-specialists/

[OhBergine]

Mr Ockrim - he's a urologist and gynaecologist so is best placed to deal with women's bladder issues.

[dazedandconfused2016]

Thanks so much Fluffysheep, Viva and Ohbergine.

Sohier Elneil At UCLH sounds good to me. Thanks for posting this link Viva - it's immensely helpful, as are all of your recommendations for UCLH.

[EilaLila]

Professor Vik Khullar, St Mary’s Hospital - private and NHS. I don’t rate Professor Malone, I know he has a lot of fans but I’m not one of them.

[dazedandconfused2016]

EilaLila, thanks for this information. I read up about Vik Khullar and apparently he has a long waiting list for both nhs and private patients. He must be good. In fact on the link posted by Viva it said that his patients may not even be seen by him but by a colleague.

Does anyone have any feedback to give me on Sohier Elneil?

[crashdoll]

I see Professor Khullar. I waited the standard 18 weeks for an initial appt. I do occasionally see his associate but they either bring him into the consultation or step out to ask his advice. The whole urogynae clinic at St Mary’s is top notch and well respected.

[owthathurts]

I have seen Sohier Elneil. Fantastic lady, very caring and listens to you. I have seen her privately and NHS. Would recommend her.

[endofthelinefinally]

Mrs Sarah Hussain North London Urogynaecologist.
Brilliant, lovely lady.
I don't know if she does NHS though.

[dazedandconfused2016]

Thanks for these recommendations guys.

I don't think Sarah Hussain does NHS work but thanks - I may need her if I can't wait for NHS treatment!

18 weeks to see Vikram Khullar is a long wait but it sounds as though he is brilliant.

Sohier Elneil sounds a great option too but I can't get through to her clinic! I'll keep trying.

Thanks so much everyone. This condition is making my life a misery.

[crashdoll]

It’s the 18 weeks target and they usually hit it in my area. To be honest, I don’t think it is is a long wait (unless your problems are super urgent), it’s standard for most specialities. Some, you will wait longer.

[crashdoll]

I mean, in an ideal world, you’d be seen sooner but sadly, that isn’t the state of play in the NHS. Wish you all the best.

[dazedandconfused2016]

Thanks Crashdoll. When I rang Dr Khullar's secretary she told me that it would not necessarily be him that saw me as he is head of urology at St Mary's and it would most likely be another doctor.

I've read that Dr Khullar goes against the conventional medical advice and prescribes long-term antibiotics for "embedded" UTIs and although I'm no doctor I'm convinced that's what's wrong with me. If I don't see him - but one of his underlings - would they follow his lead or treat me differently?

I now realise that an 18 week wait for NHS is standard. Which is nothing compared to the 9-month wait for Dr Sohier Elneil - that's what her secretary told me.

Has anyone seen Sohier Elneil privately for recurrent UTIs where they were paying fees themselves (rather than through health insurance)?

I was told it was £250 for an initial consultation but her secretary was vague about further costs (for scans etc) and said it depended on the situation.

Dr Vikram's secretary told me a first appointment privately was typically £600 including scans and results. With follow-up appointments/scans costing slightly less (but not much). That's more money than I'd prefer to pay - at this stage.

I had a GP's appointment this morning which I cancelled because I just could not decide whether to ask for a referral to St Mary's (in the hope of seeing Dr Khullar) or to UCLH's bladder unit, where I believe they have a more conventional approach. Overall UCLH has a better rating than St Mary's. But I realise I'm being a paranoid big baby.... I am so scared of operations!!!

[VivaLeBeaver]

Dr kullhars doctors would prescribe as he would. Same with Profs team. You don't always see prof but he does review all treatment plans

[dazedandconfused2016]

Thanks Viva for this advice. I'm still researching as I'm starting to wonder if my problem is not an embedded infection but may be interstitial cystitis or may even have a neurological basis.

I keep changing my mind as to whether to ask for a referral to UCLH or St Mary's, even though it's an 18-week wait. If things get too desperate (if you'll excuse the pun) I may just decide to spend my life savings on seeing Dr Elneil privately.

I would really like to be able to continue to work and the way things are going, my condition is jeopardising that.

Thanks for reading and posting everyone.

[dazedandconfused2016]

Sigh... Dr Elneil's waiting list for private patients is 2 months! I may as well wait for an NHS referral at this rate.

[VivaLeBeaver]

Get in on the 18 week nhs waiting list.

[dazedandconfused2016]

Yes, Viva... I have a GP's appointment on Monday morning and I will get her to refer me on the NHS 18-week wait.

[susansmith1]

Some of the London prices are so steep!

Have any of you thought about seeing someone outside of London? It'd be cheaper to buy a train ticket and come up North!

I see a Urologist in Leeds who works closely with BHUK and is fantastic. He charges nowhere near some of the London prices quoted here.

[soon2bejobless]

Hi Susansmith - I've only just seen your message. Thanks. I paid £250 to for a half-hour consultation with Dr Sohier Elneil in London, but going forward she is going to treat me on the NHS as I can't afford the scans required. I have to wait another 12 weeks, she said.

I didn't consider the option of going up north to seek treatment - I am from the north so it would be doable. How much does it cost to see someone privately in Leeds?

[searchingfortheanswers]

@EilaLila I'm about to book an appointment with Prof Malone Lee but saw your post saying you didn't rate him and wondered why? I like his ethos about there being an embedded infection and treating it with antibiotics. Are there any specialists up north who do that do you know? TIA.

[Chrisinthemorning]

@susansmith1
Please would you pm or let me have the name of your Leeds urologist?
Thank you