MNHQ here: proposed new NICE guidance on treating urinary incontinence and POP in women - looking for your views

[RowanMumsnet]

Hello

The National Institute for Health and Clinical Excellence (NICE) has published new draft guidelines on treating urinary incontinence and pelvic organ prolapse (POP) in women, as well as complications associated with vaginal mesh surgery - and they're looking for your views.

MNHQ is a registered stakeholder in this guideline so if you'd like to share your thoughts on the proposed guidance on this thread, we'll collate the themes and use your comments to compose our organisational response. You can also submit responses as an individual, but NICE encourages people to do it via registered stakeholders wherever possible

You can see more about the proposed guidance here and you can read the draft guideline itself here, but here's our short summing up of the recommendations:

*That there should be a 'national registry of surgery involving mesh insertion to treat urinary incontinence or pelvic organ prolapse in women', and this registry will report annually on the outcomes of these surgeries, including adverse reactions;
*An annual review for women who are using absorbent products as a way of dealing with urinary incontinence, to assess their continence, talk about symptoms and risk factors, discuss alternative treatment strategies and talk about long-term management plans;
*Offer an annual review to every woman using long-term medication to treat urinary incontinence or over-active bladder;
*The use of botulinum toxin to treat some types of OAB;
*A recommendation that women are given more information about the possible risks of sling/mesh surgery, and are told that there is uncertainty about how many women are affected by long-term complications;
*Advise women considering a retropubic mid-urethral mesh sling that these implants are permanent and may not be easily removed;
*Give these women written information on the implant including name, manufacturer, date of insertion, and implanting surgeon’s name and contact details;
*Referral of women with a suspected mesh-related complication to a
urogynaecologist, urologist or colorectal surgeon for specialist assessment;
*Guidelines on assessing women presenting with pelvic organ prolapse;
*Recommendation to consider a 16-week programme of pelvic muscle training and vaginal pessaries for women with symptomatic POP.


Those of you who have some personal or professional expertise/experience in incontinence, POP or mesh surgery might want to read the draft guideline in full; there are detailed recommendations in there regarding how to treat various kinds of prolapse and different kinds of incontinence and which medicines should be prescribed; a detailed protocol for treating women who have complications associated with mesh surgery; and comments on how healthcare teams should be organised. There are also some recommendations for further research.

If you think we've missed anything major from this summary (which is quite possible as we're not experts in this at all) then do please let us know.

Thanks
MNHQ

[Wrybread]

I have some concerns:

It doesn't seem to consider that those with connective tissue disorders (such as hypermobility or Ehlers Danlos) may need a different pre-op/treatment assessment process, and that such disorders need to be included in information gathering.

People with these disorders have slower skin healing and more fragile skin/tissue etc which may lead to worse outcomes from surgical intervention, as well as being more prone to prolapses from childbirth.

They also don't seem to include whether someone has been pregnant as one of the pieces of information to be recorded.

And one that none of my medical professionals had considered : how is the sex life affected by the treatment options? One risk is cutting nerves and losing sensation but this isn't something they're looking to record.

Sexual pleasure should be part of the assessment. Too many women have a worse sex life afterwards but the medical profession aren't even considering this as a risk factor or potential adverse outcome

[BeyondAdultHumanFemale]

Hi rowan, I will come back and read properly (and reply) when I'm not feeling so crappy, but can I ask if you're able to pin this to the top of FWR, as there were a few women there interested in a campaign re POP? :)

[BeyondAdultHumanFemale]

You know wry, I'd somehow managed to never link my burst stitches with my EDS...?!

[vivariumvivariumsvivaria]

How about prevention by getting pelvic floor exercises included in sex ed?

That'd work.

[Graphista]

For me a MAJOR issue being missed is GP's being SO resistant to referring women to specialists for ANYTHING!

RIGHT from the beginning of the guidance there's an ASSUMPTION that all women experiencing such difficulties are getting referred to Genito-urinary specialists in the first place. It's somewhat pointless focusing on the treatment after a wins gets to specialist point while currently the biggest barrier to getting the right treatment is GP's!

Dd is having a similar issue currently repeated visits to GP, has a disability KNOWN to increase likelihood of condition that ALSO means it's trickier to treat yet GP REFUSING to refer!

NICE needs to crack down on this!

I'd also wager that many women using absorbency products aren't yet at the point of seeing a specialist. Why are NICE not placing any guidelines at GP level? They're ideally placed to record patients using absorbency products for incontinence.

[AutoFillUsername]

They say they will report annually on adverse reactions to mesh surgery but my experience, as someone with TVT mesh, is that gynaecologists will fight hard to deny any connection between adverse symptoms and mesh.

I suffer from awful pelvic pain but my gynaecologist, who is from the same team as my mesh insertion surgeon, spends every appointment telling me it’s not mesh. She is convinced despite the fact that I have a private mesh specialist convinced it is mesh and the only other women I have ever found with similar pain all have mesh. My point is that despite my life being severely impacted by mesh the NHS would not register me as adversely affected. So these guidelines won’t work unless there is a real change in attitude and education of practising gynaecologists. All gynaecologists should be required to go on mesh impact training and patients should be able to be part of the conversation about whether an adverse reaction is reported.

I agree patients should be told there are risks of an as yet untold magnitude and that the surgery is irreversible. I was told neither. I believe women should be told that the surgery relies on your body forming extensive scar tissue around the mesh In order to hold up the bladder. When you realise you are asking your body to form extensive scar tissue, then you start to realise how invasive and potentially damaging the surgery is.

I’d like the guidelines to talk much more about prevention. For example, I would like to see them talk about pregnant women being taught pelvic floor exercises at their booking in appointments. I would also like to them talk about high risk births (ie instrumental deliveries, large tears etc) all being given one to one women’s physio and being prescribed kegal machines. Stop the damage as it starts, not once you get to needing surgery.

Finally there are non mesh surgical interventions to treat incontince. The NHS rarely offers these approaches now as they are more expensive and time consuming than mesh. The guidelines should say that these alternatives should be offered as an alternative to mesh to women with severe symptoms who do not respond to physio.

[Graphista]

Autofill sorry you've had such a crap experience.

Drs not listening to patients is a problem at all levels/stages. Get that addressed and then there'll be more accurate feedback on ALL issues and then NICE can ACCURATELY assess the efficacy and outcomes of treatments.

[Calledyoulastnightfromglasgow]

GPS don’t refer and it’s still accepted as normal. That said, I would rather suffer my mild issues than face a process which STILL offers mesh.

Mesh simply shouldn’t be used and it’s unacceptable that it is. Similarly, that surgical items such as mesh can be made with untested and poor quality materials needs urgent change.

Finally all women suffering mesh complications should be given compensation.

[SofiaAmes]

Here in the USA, they are just starting to treat urinary incontinence with pelvic floor physical therapy as a first port of call before operations or anything else invasive. It's extremely effective and a fraction of the cost of any of the other treatments. This is the book by the PT that I am seeing. It's covered by Medicaid which is the insurance for the poor. If Medicaid finds it affordable and cost effective, it should be getting offered on the NHS. I spent 15 years trying to get help and avoiding surgery as the first recommendation from every doctor in the UK and the US.

[PlatypusPie]

I had a referral to a pelvic physio at the same time as a referral to a gynaecologist when I first presented with POP - it was the pelvic physio who rightly diagnosed that it was a rectocele rather than the gynaecologist who dismissed my particular symptoms with ‘only a mild womb prolapse’. Two friends have also recently had pelvic physio referrals as the first treatment option - this is in the U.K. so I assumed this was already a standard protocol.

Didn’t help my particular symptoms as much as hoped ( though excellent teaching from physio) and got rereferred to a urogynacologist, which is where I should have been sent in the first place. This is something that should be included in the guidelines - for all POP symptoms, not just for mesh injuries.

My urogynaecolgist certainly didn’t rush to surgery and that only happened after pessary trials etc. He didn’t use mesh.

[BoreOfWhabylon]

I don't know if @GussieGrips is still around but she'd probably be very interested in this.

[RowanMumsnet]

@Wrybread

Sexual pleasure should be part of the assessment. Too many women have a worse sex life afterwards but the medical profession aren't even considering this as a risk factor or potential adverse outcome

Thanks @Wrybread. Just to check - here are the mentions of sexual function/sexual assessment in the doc. In these consultation responses it helps to be really specific, so can you say any more about where you think there need to be extra or different points made about sexual function/pleasure?

1.1.5 (recommendations for multi-disciplinary teams dealing with complex pelvic floor dysfunction and complications associated with mesh) 'MDTs should have ready access to... psychosexual counselling services'
1.6.1 (assessing POP) 'take a history to include... sexual function'
1.7.8 (use of pessaries) 'discuss the effect of a pessary on sexual intercourse'
1.7.12 (POP surgery) 'discuss the risks and benefits including... sexual function'
1.9.1 (assessing mesh complications) 'evaluate symptoms including... pain or sensory change that is... provoked by... sexual activity; painful sexual intercourse'
1.10.2 (considerations before removing mesh) 'explain to the woman that... surgery to remove mesh can have significant complications including... sexual dysfunction'
1.10.9 - section about 'Managing pain and sexual dysfunction' in women who have complications associated with mesh
Lines 16-20 of the 'Context' section, p40: 'POP... symptoms... include... sexual symptoms... These affect women's quality of life.'

[RowanMumsnet]

@Wrybread

I have some concerns:

It doesn't seem to consider that those with connective tissue disorders (such as hypermobility or Ehlers Danlos) may need a different pre-op/treatment assessment process, and that such disorders need to be included in information gathering.

People with these disorders have slower skin healing and more fragile skin/tissue etc which may lead to worse outcomes from surgical intervention, as well as being more prone to prolapses from childbirth.

They also don't seem to include whether someone has been pregnant as one of the pieces of information to be recorded.

Thanks for these, noted!

[RowanMumsnet]

@BeyondAdultHumanFemale

Hi rowan, I will come back and read properly (and reply) when I'm not feeling so crappy, but can I ask if you're able to pin this to the top of FWR, as there were a few women there interested in a campaign re POP? :)

Have pinned in Feminism Chat, thank you Beyond (and hope you feel better soon)

[RowanMumsnet]

@Graphista

For me a MAJOR issue being missed is GP's being SO resistant to referring women to specialists for ANYTHING!

RIGHT from the beginning of the guidance there's an ASSUMPTION that all women experiencing such difficulties are getting referred to Genito-urinary specialists in the first place. It's somewhat pointless focusing on the treatment after a wins gets to specialist point while currently the biggest barrier to getting the right treatment is GP's!

Dd is having a similar issue currently repeated visits to GP, has a disability KNOWN to increase likelihood of condition that ALSO means it's trickier to treat yet GP REFUSING to refer!

NICE needs to crack down on this!

I'd also wager that many women using absorbency products aren't yet at the point of seeing a specialist. Why are NICE not placing any guidelines at GP level? They're ideally placed to record patients using absorbency products for incontinence.

Noted, thank you!

[RowanMumsnet]

@AutoFillUsername

They say they will report annually on adverse reactions to mesh surgery but my experience, as someone with TVT mesh, is that gynaecologists will fight hard to deny any connection between adverse symptoms and mesh.

I suffer from awful pelvic pain but my gynaecologist, who is from the same team as my mesh insertion surgeon, spends every appointment telling me it’s not mesh. She is convinced despite the fact that I have a private mesh specialist convinced it is mesh and the only other women I have ever found with similar pain all have mesh. My point is that despite my life being severely impacted by mesh the NHS would not register me as adversely affected. So these guidelines won’t work unless there is a real change in attitude and education of practising gynaecologists. All gynaecologists should be required to go on mesh impact training and patients should be able to be part of the conversation about whether an adverse reaction is reported.

I agree patients should be told there are risks of an as yet untold magnitude and that the surgery is irreversible. I was told neither. I believe women should be told that the surgery relies on your body forming extensive scar tissue around the mesh In order to hold up the bladder. When you realise you are asking your body to form extensive scar tissue, then you start to realise how invasive and potentially damaging the surgery is.

I’d like the guidelines to talk much more about prevention. For example, I would like to see them talk about pregnant women being taught pelvic floor exercises at their booking in appointments. I would also like to them talk about high risk births (ie instrumental deliveries, large tears etc) all being given one to one women’s physio and being prescribed kegal machines. Stop the damage as it starts, not once you get to needing surgery.

Finally there are non mesh surgical interventions to treat incontince. The NHS rarely offers these approaches now as they are more expensive and time consuming than mesh. The guidelines should say that these alternatives should be offered as an alternative to mesh to women with severe symptoms who do not respond to physio.

Thanks for this - really sorry to hear you've had such an awful time of it.

Will note the point about the reporting system relying on the willingness/training of the specialists.

On prevention - a few of you are mentioning this - it's an important point but (to get all Dr Logic about it) this guideline is about management of existing conditions. However we can flag up in our response that there's a lot of concern that prevention isn't being well addressed throughout the NHS.

As it happens we have recently been approached by a national body that's looking into the effects of birth interventions, so fingers crossed there's something interesting coming down the pipeline there. Plus as lots of you will know our Postnatal Campaign is calling for pelvic physio for women who need it, the return of a proper maternal six-week check, etc and we will keep banging the drum on this - quite a few MPs, campaigning groups and clinicians are calling for the same things.

Finally @AutoFillUsername can you give any more info about the non-mesh surgical options?

[Wrybread]

From my experience, sexual function is often assumed by (the male doctors) to be about whether we can physically have sex without actual pain, and not so much about whether the pleasure side of it can be affected. I feel that this needs to be clearly spelled out as part of the assessment process. Men would expect to be told if they could lose the feeling of pleasure during sex due to damaged nerves. This should be made explicit as a potential risk for women. And not just for the not surgery but also for the bulking agents which can change/lessen the sensation.

[Wrybread]

*Major surgery, not "not surgery"

[Wrybread]

Also...I was just given a leaflet, about the risks. When I talked to my consultant about my concerns about mesh, I was made to feel stupid and out of date.

I had to push very hard to have the bulking agent rather than the mesh. Despite explaining that my connective tissue condition made it both more likely that such mesh surgery would lead to further prolapse as well as poor healing outcomes and greater risk of infection and of the mesh going through the tissue rather than supporting it. He still refused to accept my decision and made me go home to think about it.

It was only when I saw the female registrar for the next appointment that I felt I was listened to and my decision was respected.

[RowanMumsnet]

@Wrybread

From my experience, sexual function is often assumed by (the male doctors) to be about whether we can physically have sex without actual pain, and not so much about whether the pleasure side of it can be affected. I feel that this needs to be clearly spelled out as part of the assessment process. Men would expect to be told if they could lose the feeling of pleasure during sex due to damaged nerves. This should be made explicit as a potential risk for women. And not just for the not surgery but also for the bulking agents which can change/lessen the sensation.

Got it, thank you

[RowanMumsnet]

@SofiaAmes

Here in the USA, they are just starting to treat urinary incontinence with pelvic floor physical therapy as a first port of call before operations or anything else invasive. It's extremely effective and a fraction of the cost of any of the other treatments. This is the book by the PT that I am seeing. It's covered by Medicaid which is the insurance for the poor. If Medicaid finds it affordable and cost effective, it should be getting offered on the NHS. I spent 15 years trying to get help and avoiding surgery as the first recommendation from every doctor in the UK and the US.

Thanks Sofia. The recommendations for non-surgical management of urinary incontinence are in section 1.4 (p10) of the draft guidance if anyone wants to read through - although we note the point several of you are making about GPs not referring to physios/other specialists

[ShinyElena]

Thank you for getting involved, Mumsnet Towers.

Due to the impossibility of getting a GP appointment after work and the rather rare incontinence nurse being only available one day a month on an afternoon, I have given up care and Oxybutinin, and now self-manage.
It is all very well to recommend review and supervision ebery so often when in reality you cannot get to the surgery, because it is not a priority.

I can second the importance of women's sex life. My (female) GP explained to me that the solution would be much easier if I had no active sex life. How can that be an option for anyone, but especially people in their thirties?!

Would it be possible to change the order of discussing adverse effects of anticholinergic medicines on page 14, please. My GP spent an awful lot of time talking about having a dry mouth as a result of taking Oxybutini, but she never mentioned adverse effects on cognitive function at all. (Or possibly I just cannot remember.)
The document says: "that the long-term effects of anticholinergic medicines for OAB on cognitive function are uncertain." Let me be the judge if that is a risk I am prepared to take.

Although it is not strictly speaking part of NICE's jurisdiction, but we need better research. Can you imagine a man's illness where the treatment involves sexual abstinence, or painful and discredited surgery or pills that increase your long-term chance of getting dementia? It is unacceptable.

[Poppyred85]

Graphista
I’m sorry for your experience and those of your daughter but please don’t lump this all into GP bashing. The issue is more complex than GPS not referring patients. Where I practice I have to follow a strict management protocol for urinary incontinence before a referral will be accepted. If I don’t follow it, the referral is rejected outright because the patient hasn’t jumped through the hoops. Some of these steps are important because they can genuinely improve the situation but others are just barriers. This is true for a number of specialties. I have to complete certain forms and tick the right boxes otherwise it’s bounced back, not by other trained people but by admin staff who’ve been instructed to reject referrals that don’t meet criteria. As a practice we have to meet weekly to discuss our referrals and demonstrate our referral rate is below a certain level or face punitive measures. This is rationing of healthcare to save money being sold to people as necessary to save money or as GPs just not doing their job properly. And that’s before we even get to systemic barriers to healthcare for women. I try and do my best for my patients and while not all GPs are great, most of us are doing our best in a broken system and find it so frustrating and upsetting that we can’t offer the care we want to.

[Graphista]

Poppy - while I accept good GP's are also frustrated with the problems within the system surely you're better placed than patients to advocate FOR patients to remove unnecessary "hoops" for patients to go through.

I totally get that cuts and ideological political motivations behind certain protocols are very much part of the problem, surely GP's know that they can do a better job of getting heard by govt than patients who are dismissed as "only one complainant" "troublemaker" "mh issues so probably exaggerating" (which I've also had from GP's by the way). Surely as primary healthcare practitioners this is part of a GP's job? They know what's happening in their healthcare community, the difficulties their patients are facing, how long it's taking from first reporting of symptoms to hopefully successful treatment?

GP's are in a position to challenge the bureaucracy created by non-medics purely for cost cutting reasons.

And actually I'm sure GP's in particular realise it DOESN'T actually save money as it means repeated visits to GP. Surely long term it's cheaper to refer when necessary (as assessed by well trained, pragmatic and sympathetic GP's) get the problem resolved ASAP rather than delay, which likely leads to the cause worsening and needing longer more expensive treatment and recovery time for the patient (which for employed patients means the cost of lost work days too).

It makes no sense either from a patient care OR a financial perspective. It's short sighted.

With this particular health issue it mainly affects younger more than likely employed active women. It makes no sense to make it harder for them to get treatment probably meaning more time off work than if they'd been referred and treated earlier.

But then I do as many do, suspect this is deliberate on the part of the current govt to undermine the nhs and portray it as "not working" when if it had the proper resources and finding it would work a lot better.

[Littlemouseroar]

I’m not sure if they are interested in my input, dealing with my problems in a non-surgical manner. However, it would be nice if after you have given birth, rather than your post-natal check being told ‘you’re healing fine, what contraception are you going to use now?’, there was more focus on how messed up your pelvic floor may be and how to counteract this at home.