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

@RowanMumsnet the non mesh surgical intervention is called Burch Colposuspension. My mesh specialist told me it’s the old fashioned incontinence surgery but it takes longer and costs more so is now rarely used but the complications are less.

@RowanMumsnet I have experience of responding to NICE consultations and have had mesh surgery myself.

If you need any help with drafting the formal response please let me know and I'd be happy to help. Is this the first time Mumsnet has been a registered stakeholder or have you responded to other consultations previously? I have found it helps to make very specific suggestions for how to amend the recommendations and to provide the evidence or rationale for requesting the change.

I still need to have a proper review of the draft guidance and all of the supporting evidence that was reviewed during the process. I will come back to this thread once I've done that.

Also, they will not consider any comments that fall outside the final scope www.nice.org.uk/guidance/gid-ng10035/documents/final-scope

[quote Flocksofsocks]@RowanMumsnet I have experience of responding to NICE consultations and have had mesh surgery myself.

If you need any help with drafting the formal response please let me know and I'd be happy to help. Is this the first time Mumsnet has been a registered stakeholder or have you responded to other consultations previously? I have found it helps to make very specific suggestions for how to amend the recommendations and to provide the evidence or rationale for requesting the change.

I still need to have a proper review of the draft guidance and all of the supporting evidence that was reviewed during the process. I will come back to this thread once I've done that.[/quote]

Thanks Flocks - all help gratefully received! We have done this before but I'm sure there a few tricks we could learn

@RowanMumsnet if you could let me know of any recent consultations that Mumsnet has responded to that have now been published on the NICE website that would be useful to look at to see how NICE have responded to your comments. I've worked from the drug manufacturer perspective in the past so I will need to now do it from the patient experience side of things. Feel free to email me directly if you prefer.

There is quite a lot positive there though I agree it is weird that post-partum or postnatal information doesn't appear to be included. It would be nice if post-natal and HV checks as well as menopause-related appointment included asking about pelvic floor issues and incontinence with those so often being part of the cause. I've had four kids and treatmente for early menopause and it's never been asked and even when I've mentioned it to a GP, it's been ignored or dismissed even I say it's the main issue I'm having with early menopause alongside hot flushes.

I've been using 'absorbent products' for years and I'm now looking privately at women's health physio (I guess they would come under 'pelvic floor specialist physiotherapist'). It's not as bad as it used to be for me but I felt like I'm entirely on my own with trying to deal with it.

i was also coming to comment on hypermobility syndrome and the lack fo understanding of many, many drs that this may lead to urinary incontinence and that the treatments for oab can make it considerably worse. eg smooth muscle relaxants are not appropriate. one should not have to find out for oneself on the internet that these things are linked. The to be accused of makingup/causing the side effects by Dr who does not understand is rubbing salt into the would.

There doesn't seem to any mention of electronic kegel machines, just surgery or pads. My Kegel TENS machine has been superb in relieving stress incontinenece. I would 100% recommend that anyone who has urinary incontinence try one. Obviously if you have certain medical conditions you might not be able to.

I can echo Graphista's observations to some extent. I have had real issues in trying to convince my GP to refer me. I have been put on medication to see if that helps - the GP admitted it was unlikely to, but that it was worth a try. So I duly tried - no change. The next thing was caffeine could be contributing - I cut out caffeine from my diet. Then went back to the GP when that didn't make a difference. Then I was told that it could be related to my sciatica, so was referred to the pain clinic for my back. The consultant there said his focus was managing my pain not curing my incontinence, and suggested that I go back to my GP.

It's been two years now and it is getting worse. It's so frustrating that I feel like a stuck record going back after trying every thing that the GP suggests, but I am now at the stage where I can't have a drink on the train to work because I won't be able to make it to the loos at the station after getting off the train, and have even pissed myself at work. It's embarrassing, humiliating and traumatic but I'm no nearer a referral to a specialist than I was when I had some semblance of control over the problem.

My mum had a tape on her bladder to address the same problem and it wasn't effective, so I'm in no way deluded that surgery is the magic bullet, but it feels like accessing the help that I need is too difficult and i am being ignored, despite the extent of the incontinence, and i don't know why. My mum has the same GP as me so I can only deduce it is that my age is a factor in not being taken seriously.

Just to second the mention of exercises. Obviously, they're not going to help in serious cases or when prolapse has already occurred. But for women with mild symptoms, age- rather than mesh-related, exercises that strengthen all the pelvic/hip region muscles (not just the pelvic floor, even if that seems counterintuitive) really can make a difference. They should include that in the guidance.

I don't think the cost of pads has been mentioned? I am fully incontinent since undergoing internal radiotherapy ten years ago. I have to use adult nappies at a cost of £100 every month. I feel there should be some financial help towards this. I receive PIP for other physical difficulties, but this was reduced when changing from DLA. We're really struggling, 1200 pounds a year for medical necessity !!

Fillipe - have you been assessed by an incontinence nurse? You should be able to access pads on the NHS.

Yes I have seen incontinence nurse vivarium and urologist, also uro gynae. Diagnosed with "radiation induced cystitis" but told that only people with dementia are entitled to free pads?

Thats' not something I'm familiar with (I work in this field) - but, with the cuts that may be a thing in some areas - an appalling thing.

If you are reliant on "containment products" you should be getting them funded. If you are not, you should be getting treatment. If you are getting neither you should follow that up wth your GP, your MP and your consultants.

I'm sorry to hear that you've been left with radiation injury. That sucks.

I watched the Panorama program last year, where so many women were practically disabled as a result of the mesh surgery.
At the same time, a friend had told me about the pelvic floor probes, like a tens machine. My particular brand is Kegel8 so people can look it up.
I feel there is a huge step missing, making pelvic floor exercises easier, (ie using a machine) as a form of prevention before surgery.
I have an aunt who was considering the surgery, and she saw my Facebook post about the Panorama program and the kebel8 and she got one.
There are so many jokes about not being able to go on a trampoline etc. I realise this is the thin end of the wedge, (mild urinary incontinence); but sure.y the first part of the campaign should be improved pelvic floor health as a prevention.

Thanks vivarium

I've read through the draft guidelines and everyone's comments above. Here are my comments so far:

Suggestions for recommendations relating to prevention of UI/POP:

A number of posters have suggested that the guideline should include recommendations relating to prevention:

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

AutoFillUsername 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.

Littlemouseroar 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.

FuzzyShadowChatter It would be nice if post-natal and HV checks as well as menopause-related appointment included asking about pelvic floor issues and incontinence with those so often being part of the cause.

As RowanMumsnet (MNHQ) has also stated (Wed 10-Oct-18 10:19:55) the scope of this guideline is on the management of urinary incontinence (UI) and pelvic organ prolapse (POP) i.e. it is intended only for women WITH UI, POP or complications following surgery with mesh to treat UI/POP. Consequently, there will not be any recommendations relating to the prevention of UI/POP as prevention would be covered in separate public health and/or maternity guidelines.

For example: in the NICE Clinical Guideline - Postnatal care up to 8 weeks after birth it includes the following recommendations:
Urinary incontinence
1.2.56 Women with involuntary leakage of a small volume of urine should be taught pelvic floor exercises. [2006]
1.2.57 Women with involuntary leakage of urine which does not resolve or becomes worse should be evaluated. [2006]
Ref: www.nice.org.uk/guidance/cg37/chapter/1-Recommendations

This guideline is due to updated with an expected publication date of September 2020
Ref: www.nice.org.uk/guidance/indevelopment/gid-ng10070
This would be another one for Mumsnet to get involved in, as the current stakeholder list doesn’t include Mumsnet
Ref: www.nice.org.uk/guidance/gid-ng10070/documents/stakeholder-list-2

My additional comments relating to the recommendations:

1.4 NON-SURGICAL MANAGEMENT OF UI

Graphista 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.

I managed my own UI for 10 years by using absorbant pads, which I bought myself. I never once went to my GP to discuss this so my GP would not have been in a position to do anything about it. I think the opportunity to intervene would only be those cases where patients are getting inco products directly via their GP/community nursing team. In these cases, the draft guideline includes recommendations on offering a review, (by a registered healthcare professional or healthcare worker who is trained in assessing continence and making referals to specialist services), at least once a year to women using absorbent products for long-term management of UI. (See paragraphs 1.4.19 and 1.4.20)

Milliepede There doesn't seem to any mention of electronic kegel machines, just surgery or pads. My Kegel TENS machine has been superb in relieving stress incontinenece. I would 100% recommend that anyone who has urinary incontinence try one. Obviously if you have certain medical conditions you might not be able to.

There are a number of recommendations relating to TENS for over active bladder in paragraphs 1.4.13 to 1.4.17.

1.6 ASSESSING POP:
Wrybread I agree re the lack of considering patients with connective tissue disorders. It should be part of the initial assessment and taken into account when considering management options, since “pelvic floor weakness, rectal and/or uterine prolapse, chronic bladder inflammation” are recognised as being associated with hypermobility syndromes. Ref: hypermobility.org/help-advice/hypermobility-syndromes/the-brighton-score/

To address this concern, I would suggest that the Mumsnet response requests that paragraph 1.3.3. (assessing urinary incontinence) is repeated in section 1.6 (Assessing pelvic organ prolapse) and that both paragraphs (1.3.3 and 1.6) state that such predisposing and precipitating factors, such as hypermobility syndromes, are documented in the patient notes.

I’m afraid I don’t know of any specific references but I believe any surgery, whether with or without mesh, is less likely to be successful in the long-term in patients with connective tissue disorders because their connective tissue which holds the pelvic floor muscles in place is inherently weak, so this increases the likelihood of any surgical approaches failing subsequently. If anyone knows of any evidence relating to that please could you post a link or reference - thank you.

1.7 MANAGING POP

AutoFillUsername Finally there are non mesh surgical interventions to treat incontinence. 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.

I believe this is covered in the recommendations in section 1.7, where many non-mesh alternative surgical approaches are recommended.

I'll also have a dig into the evidence reviews to see if I can find anything else.

[quote Flocksofsocks]This would be another one for Mumsnet to get involved in, as the current stakeholder list doesn’t include Mumsnet
Ref: www.nice.org.uk/guidance/gid-ng10070/documents/stakeholder-list-2[/quote]

we've got an email saying we're represented on that! We will get in touch with NICE to check what's going on - thanks FlocksofSocks

If it’s not too late, I’d like to strongly second wry’s comments about how health professionals seem to define sexual function. In my experience it seems assumed that sexual function means “my vagina will accommodate a penis without pain”, not “I can experience sexual pleasure”

This bit really resonated for me:- 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.

Also I’ve seen significant improvement in symptoms from kegels, Pilates and electrical stimulation of pelvic floor muscles although I have grade 2 cystocele and a slight uterine prolapse, so these are not just prophylactic treatments but can also really help manage symptoms.

Vaginal delivery is a confirmed risk factor for pop.
As are delivering large babies and assisted deliveries.
I was never told this in pregnancy and I don’t know anyone who was.
Any lifestyle choice that you make - smoking or not, exercising or not, drinking alcohol or not, you are given the risks by the nhs.
But when it comes to childbearing, in my experience there are no honest conversations. There are no public health campaigns to do your pelvic floors exercises and whether or not you are told about them in pregnancy seems to be a post code lottery/down to your individual midwife.
If you try to get a balanced idea of the risks of c sections and you have to sift through a ton of medical literature and try to work it out.
Childbirth is the only area of healthcare, I can think of, where deceit by withholding information is acceptable.

I think more honest conversations should be had, about pop risks with women who are pregnant.
There is the arguement that it may scare women, and that is a valid point. But being in the dark isn’t great either. you wouldn’t go into an operation for, say a hip replacement blind to the risks because the staff didn’t want to scare you with honest information.

I have a prolapse after second child. I wish I'd known how important pelcic floor exercises were. Agree there should be much more focus on this pregnancy

I have the TVT mesh. I had a very bad tear and damage during childbirth. I too have a lot of pelvic pain but am dismissed it I mention it in the same breath as the mesh.
I'm wondering if mine is embedded as something strange showed up on my extra , they referred me for a scan as they were so concerned and then suddenly it all went very quiet!

No one told me anything about any side effects before I had the mesh.

My late Mum had mesh and had constant issues and pain. She was later diagnosed with ovarian cancer. The mesh cut through various things which caused her more trouble.

I agree with a PP that adverse effects will only be recorded if the doctor a) listens properly to the patient and b) agrees they’re related to mesh. I had serious issues with a mirena coil and I was told that what I was experiencing weren’t listed side effects and weren’t related (funnily enough they resolved quickly once the coil was removed). I am certain the issues I experienced weren’t reported. How often are these things actually reported / considered related? When people have multiple health issues, how do they ascertain what’s related and what isn’t?

Personally, given then horrific stories of so many women, I am appalled that mesh is still being used. I do not believe that men would be expected to put up with this.