Are "top rated" Harley Street surgeons actually all they are cracked up to be or are you just paying for the address and savy marketing ?

[Avourneen]

Has anyone here had surgery for bowel endo with a big name surgeon in London?

How did it go ? Was it successful? I want a great surgeon but dont want to be paying just for the reputation and the swanky Harley Street address......

[claudia_91 Moderator Endometriosis UK]

Hi Avourneen,

Thank you for your contribution to our forum. We understand that receiving the right care and treatment is extremely important, and finding the appropriate consultant is challenging. We just wanted to let you know that we are not allowed to discuss specific surgeons here. Each patient's experience can be very different.

We recommend that a good starting place for endo patients is on the BSGE website. Here you can find details of accredited endometriosis centres who have specialist endometriosis consultants: bsge.org.uk/centre/

Hoping this information helps you, and you find a consultant you are happy with very soon. Take care.

[Avourneen in reply to claudia_91]

Dear Claudia,

As you will notice I haven't mentioned any specific surgeon in my post. So I think your "ticking off" is quite unmerited. The sad fact is that surgeons are not obligled to keep any records of their success rates etc. This means that as a patient all we can hope to judge a surgeon on is how good at marketing and website design he or she is.

I have had two surgeries in 6 years now one with the NHS where incorrect procedures were followed and the operation was unsuccessful. The second time I had an expensive private operation to supposedly remove all the endometriosis and have just been scanned and found that there is still tons of endo and most of it was missed.

This type of thing may not matter much to you but it really does to patients who are trying to find a decent surgeon and who are suffering with immense pain. The surgeon who performed my last unsuccessful operation was on the BGSE website and is very high profile but the person who is now advsisng me says he cannot possibly have removed much endometriosis at all. Several other pateinets treated at the same time have had the same experience all of them having been advised that their operations were botched.

If the purpose of your platform is to help people find better care and help then surely allowing patients to discuss their own experiences of treatment is vital. Banning discussion of the patient experience does not help anyone. In fact it could lead to medical malpractice being covered up. Is that thepurpose of your website ? Does it exists just to stealth market certain physicians?

I am considering an operation with a supposed top doctor in Harley Street and have not mentioned any name (there are many "top doctors " operating from there ) just to see if paying for a supposedly premium experience makes any difference to the treament people have recieved in general.

I am greatly disappointed that your website bans discussion of the patient experience and will consider whether this fact should be publicised in the national press.

[Cailleach in reply to Avourneen]

Hi, Without getting into any debate about what should be on this website -the Facebook group Endo Guidance and Information Resource UK does allow discussion of individual surgeons etc.

[Puffling1 in reply to Cailleach]

I’m not on Facebook but I think I need to be as I’m really worried about whether I’ve chosen the wrong surgeon. Is it a matter of just making an account then looking for this Facebook group. I’m rubbish with social media and don’t really have a clue what to do

[Cailleach in reply to Puffling1]

Yes I would think so. Cannot guarantee that you will get an answer about a specific surgeon though, it seems to be a big group but depends on whether someone who has had experience of that person sees your post.

[Lindle in reply to claudia_91]

I am not sure why endo uk always tell women with endo to start with the BSGE list. I have said so many times that this isn't the case. As endo uk must know the centres are in tertiary care which are for cases defined as 'highly specialised' in the NHS England manual for Prescribed Specialised Services and this only applies to severe endo as defined in the corresponding NHS England treatment specification that relates to the entry in the manual. This is giving incorrect information. As is clearly stated in the manual, non-severe endo (which would include initial diagnosis) is treated by gynaecologists with a 'special interest' in endo and commissioned by CCGs in secondary care and only severe endo is treated in tertiary centres, with certain exceptions, and commissioned by NHS England. While this only applies to England in terms of the manual the same principles apply to the devolved boards as per NICE. To just reproduce this incorrect text in comments is not helping women.

[Puffling1 in reply to Lindle]

What are centres in tertiary care? Is treatment with a BSGE surgeon at smaller private hospitals classed as tertiary care or should severe endometriosis only be treated at larger hospitals? Sorry if this is a dim question, I’m awaiting surgery so I’d really like to understand your post but I’m not familiar with the terms.

[Lindle in reply to Puffling1]

No it's not a dim question - a very important one actually - and it comes up a lot.

Ultimately it is all about regulations and how they apply to patient safety. In England it is a legal requirement under the Health and Social Care Act 2012 that severe endo must only be treated in centres of excellence on the NHS by a multidisciplinary team. The reasoning is that for highly specialised cases, such as severe endo is, when treated in centres it means that the surgeons operate on such cases a lot and so gain the advanced skills and experience required to treat such women safely. We know that there are variations in the outcomes in centres but that is a different issue - we are talking theory and regulations here.

So on the NHS severe endo must only be treated in a centre. Tertiary just means a third level of care after primary (GPs), secondary (routine hospital treatment) and tertiary (for specialised cases). The important thing as far as your comment is concerned is that in private care patients mustn't be disadvantaged in any way as compared with how they should have been treated on the NHS when it comes to safety so the same standards apply. This means that when being treated privately for severe endo it must still be in a centre setting with the same multidisciplinary team - so two gynaecologists plus colorectal/urology as required. This is expensive and many private insurers don't cover it. Likewise we have seen some BSGE surgeons refuse to operate privately on severe endo as they don't have the centre facility; this is the correct thing to do if they don't have a private centre. Picking a surgeon off the BSGE list and having them operate privately must only be in the same 'centre' setting with all the BSGE requirement still applied. There are some private centres that conform with the required standards but having a BSGE surgeon operate privately on their own must be avoided as it compromises safety.

Note that a centre doesn't have to be on the BSGE list as long as they apply the correct BSGE standards but the problem is these are hard to identify unless they have a website clearly indicating they are a recognised endo centre. I can think of two of those.

[Puffling1 in reply to Lindle]

Thanks for the explanation Lindle, I think I understand. I’m about to have severe endometriosis excision & hysterectomy with a BSGE surgeon and a bowel surgeon but as there’s only one endometriosis surgeon not two present that won’t comply with the required standards?

[Lindle in reply to Puffling1]

'I am giving you the link to the NHS spec which says on page 4:

'All women with severe endometriosis who require surgery will have nationally standardised treatment pathway (see appendix) enabling them to:

Access laparoscopic surgery with two skilled appropriately trained

laparoscopic surgeons working together, in line with the criteria used for

BSGE accreditation criteria'

Also check appendix 1 which gives the percentage of cases that certain standards must apply to. It is clear that the two gynaecologist requirement is for 100% of cases. The reason is that, as we know, severe endo is very complex and every case can be different with the surgeons not really knowing what they will find until they get in, even after detailed scans. There can be critical judgements to be made with need joint decision-making on the spot. Also it is important from a medico-legal point of view if surgeons should ultimately be required to defend themselves.

On that point, it is also recommended to make sure detailed photos and/or video is taken which you can have copies of since, alarmingly, there is no requirement for these to be done.

england.nhs.uk/wp-content/u...

[Avourneen in reply to Lindle]

Dear Lindle,

Thank you for your reply. This gives the impression that perhaps having an operation on the NHS at one of these centres is safter and better than going privately. I had my first operation on the NHS and they only did ablation and missed most of the endo but it was not at a specialist centre and although I had two gynaecologists neither were very specialised as endo surgeons.

6 years down the line and after an additional excison operation my endo is worse not better. I have been told by another surgeon that my private excison missed most of the endo but gave me lots of adhesions. Not a great outcome.

I will look into seeing what these specialist NHS centres do. Why are surgeons not obliged to keep records of how sucessful these operations are ?

I have been told repeatedly in the private sector that excision is much more effective than ablation but I spoke to one of the UK's leading endo researchers the other day and he said there was no evidence for this at all.

We as patients need both treatments and individual surgeons to be assessed for how effective they are otherwise this whole business is just like the Wild West.

[Puffling1 in reply to Lindle]

Oh I’m quite worried now. I assumed as it was a well respected BSGE surgeon all required criteria would be followed. So the laparoscopic bowel surgeon doesn’t ‘count’ as he’s not a gynaecologist? Should I also be asking them about photos/videos?

Sorry for all the questions. I just want the best chance of a good outcome and am so worried about having to trust a doctor with my body that I have to choose when I don’t feel well informed

[Avourneen]

Can you explain where I am discussing an individual surgeon ?

[Avourneen]

Sorry, I misread this Caileach I'm glad to hear that the Facebook group Endo Guidance and Information Resource UK does allow discussion of individual surgeons etc. I hope that this website will allow patients to discuss their surgical experiences.