Need medical guidance for brain aneurysm…will go p... - Headway

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Need medical guidance for brain aneurysm…will go private as NHS VERY slow

golfguru profile image

identified i have an aneurysm in my ACOM artery. 11mm. Need an op. NHS are slow with backlog. Thinking of other options but have no idea who to speak to to get the info I need to make a decision as to where and when this surgery should be carried out and most importantly by whom?

HELP!

11 Replies

Have you been able to speak directly with your NHS consultant? There is an NHS workload backlog, but this is largely owing to theatre and ICU availability (lack of). Your consultant should take the time to speak with you to discuss fully your situation and explain things, including how s/he's weighed the risks to you of delaying necessary surgery.

My advice is to go through your consultant's NHS secretary, preferably by email (just ask the clinic for the secretary's email address) and address your concerns and your questions directly to your consultant. They should respond personally.

Hopefully, you will be better informed by the lead clinical consultant about the procedure, timeline and risks to you, also about alternative options such as referral to an alternative NHS hospital with, perhaps, less of a wait time. You can choose where to have a procedure as part of the NHS 'options' process.

If you've got a spare hour or so, make a cuppa and take a look at this website: gov.uk/government/publicati...

Good luck!

Bridgeit's reply has useful information, particularly the link leading to Clinical Commission Groups (CCGs) and how to contact your local one.

And definitely get in touch with the consultant's secretary. I've had great help on 2 or 3 occasions from cardiology and rheumatology secretaries who were knowledgeable and very approachable/helpful.

Also you can contact the Headway helpline for support & expert advice on - 0808 800 2244 (freephone/office hours). Good luck golfguru. Cat x

golfguru profile image
golfguru in reply to cat3

Thank you Bridgeit and Cat3. I will send an email to the secretary and see what happens. Do you have any idea how one finds out who are the best surgeons for microvascular clipping?

bridgeit profile image
bridgeit in reply to golfguru

That's a difficult question to answer; it all rather depends on personal experience and location.

My own opinion, which is by no means professional (I'm not a medic), is that Addenbrooke's in Cambridge is very highly regarded. They have some of the best neurosurgeons and interventional neuro-radiologists (I think your condition needs both) in the world.

Also, I know that the Walton Centre in Liverpool (brain and spine specialist) is very highly recommended.

My understanding is that both hospitals have people referred from all over the country for treatment.

There may be other facilities equally good, of which I'm unaware!

Sorry but I wouldn't know where to begin. My haemorrhage was spontaneous so I was unaware of where I was or who would be performing the procedure to stop the bleed (coiling in my case).

I guess if I were looking for a private neurosurgeon in my area I'd look online at the full list in my area then research each one's credibility, experience and reviews, although it would be pretty time consuming.

But since my bleed (Subarachnoid haemorrhage) I'd put my trust in any qualified neurosurgeon ; for me they're a breed apart in terms of dedication and expertise.

I spoke with mine at length at my follow-up appointment and he was so enthusiastic in discussing the procedure and how rewarding it was for him seeing the results of his handiwork in a walking/talking person ! 😉 x

I would worry about a private hospital carrying out such a procedure. Private hospitals rarely have intensive care units. From my experience when training as a nurse, I had a placement in a private hospital, admittedly they didn't carry out such surgery, but even, what I would call minor emergencies, they blue lighted patients to the NHS.

The surgeons are often the same surgeons employed by the NHS, so I wouldn't doubt there skill, but the after care, although often you are in nice surroundings, the do not have the same level of care.

Just say what I experienced.

bridgeit profile image
bridgeit in reply to Pairofboots

I fully agree with you. I've had quite a bit of private treatment for run-of-the-mill stuff over the years to get it done quickly and by someone I choose. However, I've found that private aftercare can be woeful. I think this is because nurses in a private hospital are generalist. In the NHS, it's easy to ring a clinic and get advice from a nurse who understands the clinic's work and lots of aftercare issues. That is very reassuring. A nurse in a private hospital is very likely to suggest you call 111!

I've also had some esoteric neuro work done privately (procedure not available within the NHS), and the specialist made it clear that he only worked within his NHS facility. He would not consider using a private establishment. This was pre-covid. His private clinic was always slotted in during a weekend. The procedure also cost a small fortune!

Private hospitals aren't geared up to support neurosurgery.

golfguru profile image
golfguru in reply to bridgeit

Thanks .... I will try and find other NHS hospitals that have good reputation and a short waiting list! Bit of a minefield it would appear

JoannaHelen profile image
JoannaHelen in reply to golfguru

Hi, I had my clipping at The National Hospital of Neurosurgery and Neurology in Holborn, Central London. They were amazing. Saved my life.

Pairofboots profile image
Pairofboots in reply to bridgeit

Don't get me wrong, private have their place for people who have insurance or enough money, but people think private means better, when in reality it means done to make a profit using the least expensive method's.

Got to admit I had thought private would have all the best kit, until I spent my placement, and found it to be smoke and mirrors. Patient areas were lovely, theatres and behind the scenes not a match on the NHS.

I also didn't like the spreadsheet mentality in private care, each dressing had to be accounted for even if it was you that fouled it, you added a second dressing to the bill, micropaw tape was used by each cm and charged accordingly.

And when patients were emergency transferred to the NHS, did the private hospital pay the NHS? No!

For NHS treatment I know that The Walton Centre in Liverpool and Salford Royal Manchester (where I was treated) are both considered centres of Excellence in neuro-care.

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