Unhappy with standard of care

[Spod]

Hi - I'm new to mumsnet but have been reading through the site. I'm booked in for an elective CSection on 17th Oct (39wks), first baby. Pregnancy has been normal so far but I have had several spinal operations over the past few years which is why I'm opting for csection. I'm 29 wks and feeling totally NOT reassured. I have shared care btw GP and midwife for standard antenatals - plus have been to see consultant ob/gyn, who it seems every mum-to-be gets to see at least once during their pregnancy. I have expressed my desire for a csection since day one and also my concerns about whether or not I can have a spinal block (i have bone grafts and metal plates and screws in the base of my spine)which is what I would prefer to a general. Considering the extent of my pre-existing spinal injuries I was expecting to be treated as an 'unusual' case and that perhaps someone somewhere would seek to discuss my birth/csection with me! At the consultants appointment I wasnt even invited to sit down and the whole app lasted 2 mins! I have no information about what happens at an elective csection, what I need to consider/questions to ask, what preferences I can express in terms of general/spinal, types of stitches etc, effects on breastfeeding how long I'll be in, whether or not they can avoid cutting through stomach muscles (important for spinal injury patients) . Also (sorry this is getting long) I have a connective tissue disorder (which has meant i heal poorly) and in previous surgeries I have needed more blood transfusion than the surgeons expected - this is worrying me - who should i tell? On top of this (!) the consultant I have met (for 2 mins!) is only a locum so may not even be the one doing the c section! I am feeling very uneasy about having my section at this particular hospital.....and it only scored a 0* in recent league tables! Can I switch hospitals? how? How do I get my concerns listened to? Who needs to know what? I have Bupa and may be covered for csection....but where do I go? Are private hospitals good at this sort of thing.... at least I would have a decent appointment time to discuss my concerns? I'm really worried that the first opportunity i will get to discuss my concerns will be the day of the csection!!! Any advice on any of the above would really help to reassure me.

Oh, dear, I do feel for you. Where are you? I had my c-section at Kings, and despite being in hospital for over a month still had to literally run down a corridor to chase an anaesthetist to discuss options. However, I did meet and talk to the man who was supposed to be doing the section (eventually went private a it was covered by my insurance). They tend to talk to you much later in the procedings than this though - usually when you are admitted or at 35 weeks. I certainly would NOT go to a private hospital for a c-section particuarly if you are at all a complex case - you need a good, big teaching hospital with lots of expertise and post birth care for you and your baby. There are several discussions on this site about what having a section is actually like. I can tell you what having an elective is like and what it is like having a spinal block (you will be offered this unless it is absolutely impossible as it is much safer than a general) and you should know things like they can deliver the baby right onto your tummy if you request it. They don't cut the stomach muscles, just part them to get to the uterus. Effects on breastfeeding are that it may take up to a couple of days longer for your milk to come in, but don't panic, it is OK for your baby to have colostrum before then. I breast fed my ds, and he went to the breast right away. The cut will be very low on your bikini line (in your pubic hair) where your scar will be unobtrusive. There is a fantastic midwife on here (Mears) who is great at giving reassuring advice. Ask any questions you want, and talk to your midwife (call her) and ask her when you will get a chance to discuss all these issues with a consultant.

Spod, where are you in the country? It sounds like you need to find some care that you are happy with, and that means firstly finding a consultant that is happy to talk to you and give you the basic care that you deserve (which this one clearly isn't!) and second, move to a hospital that you are confident in, if necessary. I would second aloha's advice and not go anywhere near a private hospital - you need to be in a good, big NHS hospital.
My first move would be to speak to BUPA, give them your history, say that your NHS consultant has said you will need a CS etc but you would like to be able to choose your consultant and will they cover you. (Remember that you may also need to be covered for obstetric physiotherapy afterwards to learn proper exercises to get your stomach muscles back in shape and support your back properly).
If the answer is yes, then wonderful. If no, investigate that a bit more and get their reasoning why - sometimes they change their mind if you push them a bit.
Then speak to your GP and express your concerns and ask him to provide another recommendation of a decent ob/gyn consultant - private, if BUPA have said that they cover you. If you aren't enormously confident in your GP's ability to recommend a good local ob/gyn who can manage this, then you have a couple of options. Either speak to another GP (even one at the same practice), or probably better - you presumeably have contacts with other consultants - specifically the ones who operated on your back in the first place, and anyone you see relating to your connective tissue disorder. Phone them both (all) up, explain your situation, and ask them if they can recommend anyone to care for you and your specific needs and manage your birth. Honestly, people love being asked for their opinions, especially consultants about their peers (and I know this as the daughter of an ob/gyn consultant and a GP!). Then put all your information together and see what your options are. But the great thing is, is that you have 10 weeks to really sort this out, and that is masses of time. The key thing to remember is that you HAVE to understand the implications of ALL of this (c-section, spinal issues, physiotherapy afterwards, anesthesia, connective tissue disorder etc etc) and if anyone tries to fob you off otherwise, go elsewhere - change your gp if necessary, demand to see another ob/gyn who will provide you with a proper consultation etc.

And let us know how you get on!!! Best of luck

Thanks for your thoughts. I’m in Milton Keynes. I think my next nearest hospital is Northampton – but I have no idea where the nearest teaching hospital would be. I should have said that my GP is great and she’s well aware of all my spinal probs…when I voiced my concerns to her about the consultant not seeming overly concerned she simply said that she doesn’t really have much influence over that side of things! This was after I had an app to see consultant but was passed to a registrar – who told me I was large for dates and needed a scan – only to have to chase up the appointment myself as the referral never got made. When I did chase it up the consultants office eventually got back to me and said they had changed their minds and I didn’t need a scan after all as I was probably just one of those people who carry large!!!!! This all happened without actually meeting the consultant!! I was tad miffed! I think I will try and speak to my spinal consultant – if they can recommend a particular consultant for me can I change my hospital and have baby in London area do you think? I know I have 10 weeks to get this sorted but having had numerous surgery I am well aware of all the potential hiccups, waiting periods etc that make getting referrals and appointments on time very stressful – so I don’t want to leave things too late. Plus – its difficult enough getting an appointment with either my GP/midwife at the moment. My last check up was 4 weeks ago and I cant get another antenatal appointment for another 4 weeks even though I am supposed to be on fortnightly checks!!! So you can see why I am a bit concerned. I’m just not sure how much I can ‘demand’ if you know what I mean – the whole process seems set up to deal with ‘normal’ cases in conveyor belt fashion!! The funny thing is that I’m used to dealing with doctors, consultants etc and am not in the least bit intimidated by them – but they seem to be treating me like a total moron!!! I do have a 36 week consultants appointment but I expect it to be like the last one to be honest. I have even been thinking about trying to give birth naturally just so I can have more of a say in what happens at the birth and afterwards etc… but I know that’s not sensible given my spinal problems.

Sorry about last post didnt realise punctuation marks screw it up! - heres post again:

Thanks for your thoughts. I am in Milton Keynes. I think my next nearest hospital is Northampton – but I have no idea where the nearest teaching hospital would be. I should have said that my GP is great and shes well aware of all my spinal probs…when I voiced my concerns to her about the consultant not seeming overly concerned she simply said that she doesnt really have much influence over that side of things! This was after I had an app to see consultant but was passed to a registrar – who told me I was large for dates and needed a scan – only to have to chase up the appointment myself as the referral never got made. When I did chase it up the consultants office eventually got back to me and said they had changed their minds and I didnt need a scan after all as I was probably just one of those people who carry large!!!!! This all happened without actually meeting the consultant!! I was tad miffed! I think I will try and speak to my spinal consultant – if they can recommend a particular consultant for me can I change my hospital and have baby in London area do you think? I know I have 10 weeks to get this sorted but having had numerous surgery I am well aware of all the potential hiccups, waiting periods etc that make getting referrals and appointments on time very stressful – so I dont want to leave things too late. Plus – its difficult enough getting an appointment with either my GP/midwife at the moment. My last check up was 4 weeks ago and I cant get another antenatal appointment for another 4 weeks even though I am supposed to be on fortnightly checks!!! So you can see why I am a bit concerned. Im just not sure how much I can demand if you know what I mean – the whole process seems set up to deal with normal cases in conveyor belt fashion!! The funny thing is that Im used to dealing with doctors, consultants etc and am not in the least bit intimidated by them – but they seem to be treating me like a total moron!!! I do have a 36 week consultants appointment but I expect it to be like the last one to be honest. I have even been thinking about trying to give birth naturally just so I can have more of a say in what happens at the birth and afterwards etc… but I know thats not sensible given my spinal problems.

Spod have you thought about contacting your local NCT branch? They may have local knowledge of the hospitals and be able to give you some help with this.

Some branches have caesarean support groups.

You could also email the contacts on this caesarean site with all your questions as posted here - I bet they can help with some answers and if you have the confidence of having spoken to someone who can give you good answers, you'll feel better and stronger when you go in and make your requests for transfer etc.

Good luck.

Poor you Spod. Your GP may be great, but she certainly isn't pulling out the stops for you here if she is washing her hands of the consultant's nonsense and only giving you antenatal appointments every 8 weeks instead of every 2. It may be that she is extraordinarily overworked like so many other GPs but this isn't on.
I think you will only get decent care if you ARE demanding - which I know gets more and more difficult to do the more and more pregnant you are (if you are anything like me that is!). But its true. I would definately speak to your spinal consultant and say you are being messed around in 100 different ways and see what he says. Ideally he should write a letter to crap ob/gyn saying he understands you are under his care, describing your history so the ob/gyn knows you are being watched by another consultant.

Then you should write to the crap consultant - a very matter of fact letter - saying that you have these problems - 1, 2 and 3, which following consultation with your spinal consultant mean that you need specialised care. You need an appt asap with him and ideally with anaesthetist to discuss - timing and implications of caesarian both generally and in light of your previous surgical history and connective tissue disorder; anesthetic options, risks and implications given your spinal history; post operative risks and need for physio etc given your spinal history. You would like this appointment in the next three weeks. You should also say that you have been disappointed with the care to date - being messed around re size for dates, etc. And finish by saying that if you are unable to have this appointment within the timescale you will move to another consultant who can provide you with the care you need.
I would copy that letter to your GP with a letter to her saying "just to keep you informed as I am concerned I am not getting anything like the level of care that I need and I feel that this needs to be drawn to Mr X's and your attention." I would also add that you appreciate that her surgery is very busy, but that you need your 2 weekly antenatal checks and 8 weekly is simply not acceptable.

Once you write a letter it goes into your file and you will find that everyone will take you a great deal more seriously. Which, frankly, they need to!

Don't know about whether you can have it in london - I guess if it is an elective caesar then you could theoretically, but obviously if BUPA are picking up the tab you'll have a lot more choice than if you try and fight through the NHS.

Sorry if you think that this all sounds rather combative, but I think if you have been treated like this so far, you need to do something different to make them all sit up and change their modus operandi. Otherwise you'll be heading into this complex medical situation badly informed, badly managed and consequently with much higher risks of things going wrong....

what do you think??

Spod - after reading through your post I am wondering why you want to opt for an elective caesrean section? Why do you think that a natural birth would not be sensible? Has your consultant told you that? With your history of connective tissue disorder and poor healing, would you not be better avoiding surgery? As this is your first baby you don't know how you would labour.
So far my post has not been very reassuring - sorry for that.

If you definately require a C/S then I think that you have to make an appointment with your consultant to discuss your concerns. I would not opt to go to a private hospital for delivery incase of any complications. Having an appointment means he would have to make time to discuss your issues. You can phone his secretary and ask to see him. Also I think it is imperative that he arrages an appointment with the consultant anaesthetist who will make the decision regarding anaesthetic. He needs to be aware of any previous surgical problems you have had. A caesarean does involve parting the abdominal muscles just above the bikini line area usually. They are actually pulled apart rather than cut so that they tear along natural lines that will aid healing afterwards - sorry to be graphic. The type of stitches afterwards depend on the surgeon's preference at the time. If there are concerns about poor healing then the consultant may prefer to use stitches that do not dissolve, or staples. It will be much better if you could speak to him directly because there are so many variables. Your midwife should be able to help you get a decent meeting with him. Good luck with getting the information you need.

Mears - my reason for opting for a csection is that i have had extensive lower spinal surgery - which hasnt actually improved my back pain and I am therefore very reluctant to do anything that will make my back pain worse in the long term. I have already exausted all options for spinal treatment and am simply stuck with the pain. I cant work and have great difficulty doing 'normal' things as it is. My spinal consult did suggest after last surgery that dont attempt natural delivery. I will contact my spinal consult and discuss with him. I think getting him to write to the hospital is good idea and i will also write to my consult and list my concerns. I worry a little about complaining to those who will be cutting me open!!! I agree that 8 week checks is crap - i know its cos they are on holiday for some of that time (cant hold that against them) but their appointment booking system is impossible - cant book more than 2 weeks ahead for GP, can only get so many appoints booked by phoning on the day...then they change the system....oh it goes on!!! it could almost be funny if I werent so aware that i do need a little extra care!! Thanks for the CSection website also - i'll check it out. At least my cat is sympathetic!!

Sorry if I'm thick, but why does giving birth vaginally increase the risk of future back pain?
Are there ways to give birth vaginally that would reduce this risk?

I ask as someone who has occasional back pain, and did have extra back ache after my first was born, but it went away again after a few months. I think I got extra back ache because labour was prolonged by interventions & the contractions otherwise over-worked/exhausted the muscles in my lower back. I didn't have any back pain after Baby_2.

Isn't the problem likely to be that in vaginal deliveries the bones of pelvis and the coccyx move? This might well be problematic if there had been a lot of surgery in the area and some areas had been fused and have metal plates in, surely? I'm certainly no expert on this sort of thing, but some women do end up with coccyx problems esp if the baby presses on the area during childbirth. . Again Spod, I think the advice to speak to your spinal consultant again (phone him! I talk to consultants all the time as a journalist - they do have time!) and also call the consultant and put the pressure on your midwife. I agree, getting information is a nightmare. If you do go ahead with an elective c-s and you want someone to describe exactly what happens, I'd be happy to help.

zebra - it isnt a case of increasing back pain but a case of causing permenant damage to my spine as I have structural abnormalities and weakness in my lower spine. Where I have had my spine fused I have lost significant mobility and therefore any pressure in that area is likely to cause serious damage to the level above my current fusion - this would require another fusion, removal of disc etc etc - which is what i need to avoid especially as it takes well over a year to recover from. I could put up with increased temporary back pain as I'm well used to that but long term damage isnt something to risk if there is another way of giving birth! Aloha - thanks for your encouragement - I will speak to my spinal guy - he's one of the good guys! who actually do speak to patients and go out off their way to ensure your wellbeing. I will get in touch and chat with you about having a csect. my main aim with it is to get out of hospital asap and get on with recovery - i know csecs are painful and need to be careful but compared to back surgery I'm not expecting to be suffering too much to be honest. I'm more concerned about making sure that the people opertaing have all the facts regarding my spinal and connective tissue problems so that I'm in the best position to make a quick recovery. Thanks for your support!

Actually, spod, I don't remember my elective section being all that painful!!

You may still be able to have a spinal anaesthetic, depending on the levels which are fused, but analgesia is pretty good these days, and I doubt it will be any more painful than a spinal op. Much less so, I would say. FWIW, when my spinal wore off I had one jab of diamorphine which made me feel extremely woosy, then all my pain was controlled with coproxamol and voltarol supposotories. I was up and walking about the next day, and able to get into the bath and soak-bliss! My incision was rather larger than average (and I think they cut through my muscles as well ) because I had a large fibroid which was in the way, so I'd imagine a "normal" section would be much less painful. And just think....your perineum will be painfree! Funnily enough, one of the few "downsides" about having had an elective section and therefore no labour is that I still sometimes found my self wondering where dd came from ! I have absolutely no sense whatsoever of having given birth at all and no sense of achievement!

Thanks Tissy - nice to know its not all bad.... after my last spinal op I was out of bed and taking myself to the loo the same day so i fully intend to do the same with the section! i dont make a great patient...hate being told to stay in bed and i think its much better for you to get up and get moving...laying in bed only gives me back pain anyhow!! I have thought about what having the csection - and I was thinking that you must suddenly feel very empty without the baby in there - someone recently said that they miss the baby not being in there and i can relate to that now! strange! On the plus side i dont go in for any of the'missing out' thesis - that if you have a csection you are somehow missing out on something - need to be more pragmatic about it in my case i guess. Do you know what level they put the spinal in at? I'm fused at L4/5... but all the bolts are at the side of the spinal column and the grafts and replcement disc is further inside and not where a needle ould need to go i dont think - not sure. how far up could they go with the needle do you think?

They usually use L3/4, but can go up to L2/3, I think. Definitely discuss it with the anaesthetist, and if possible get him/ her to look at your spinal Xrays before committing him/herself! If your section will be at a different hospital to your spinal work, then ask your spinal surgeon if they can send the Xrays(or at least one fairly recent one) to the anaesthetist. It may of course, be difficult to pinpoint one anaesthetist to ask, of course, especially if the obstetrician is a locum. My section was booked on a Thursday and we had a choice of two anaesthetists who alternate with that surgeon's list. If the obstetrician can't name his anaesthetist(s) then write a nice letter explaining your predicament to the CD (Clinical Director)of Anaesthesia at the Obstetric hospital, and they should be able to arrange for you to see one of the anaesthetists who usually does obstetrics, and they can write in your notes what you have discussed.

HTH

Blimey Tissy, what great advice!
It's not that bad, really. I couldn't take coproxamol because it made me feel awful - dizzy and faint and disoriented but a shot of diamorphine and some ordinary painkillers later, I was fine. I won't say I was blissfully comfy the day after, cos I wasn't, but I wasn't in agony either. And most people have stitches somewhere! BTW I didn't feel like that about my ds. I felt a fantastic sense of achievement having grown a real, life, fabulously healthy and wonderful baby in my tummy all by myself!

Blimey Tissy, what great advice!
It's not that bad, really. I couldn't take coproxamol because it made me feel awful - dizzy and faint and disoriented but a shot of diamorphine and some ordinary painkillers later, I was fine. I won't say I was blissfully comfy the day after, cos I wasn't, but I wasn't in agony either. And most people have stitches somewhere! BTW I didn't feel like that about my ds. I felt a fantastic sense of achievement having grown a real, life, fabulously healthy and wonderful baby in my tummy all by myself!

I have an appointment to see an anaesthetist this friday - whether or not he's the one doing it one the day i dont know. I have my spinal x-rays - and have been taking them with me to ob/gyn consult appointments but of course they didnt look. the anaesthetist is likely to be more interested given that its him sticking the needle in! If they can go up to L2/3 I'll feel much better as its some distance away from the fusion then... I really dont want to have a general as i want to hold the baby asap. i must write a list of questions down before I go! Thanks for the advice - it does help to talk to people who been there and dunnit! much more help than my midwife has been. The more i think about it the more i think its just ridiculous that the system isnt really set up to deal with non-standard cases...at the end of the day my needs are not that weird/complex/expensive but most people seem incapable of getting their heads round it! and of course the bottom line is, its my spine and if I dont ensure the risks are minimised it seems no-one else will!! I've been loking through this site and the number of people who have had bad experiences with medics - making women feel stupid and unimportant - its awful really. if they mess up we're supposed to put up with it, if we miss a routine appointment to get wee tested we get no end of lectures and finger wagging!!!! we don't need talking down to! i bet theres a few people on here with outrageous examples of being treated like a pregnant idiot!!! cheers for advice... feeling slightly more empowered now!

I agree, you do have to be demanding. I still laugh to think of myself at nine months pregnant chasing drs down the corridors of Kings to force them to talk to me!

and I agree aloha... it is a bit of an acheivement isnt it!!! I wont feel disappointed to have a csection either. and is it just me or can anyone else remember ever having a flat tummy?

if I'm still demanding answers when 9 mths pregnant theres gonna be some serious tantrum throwing i can tell you!! how dare they ignore you!! cheek!

I didn't mean that it isn't an achievement, just that I don't have that feeling. Can't say it's due to the section, though- I may not have felt anything after a labour either!

Spod - has your obstetrician not written to your spinal consultant or looked at your X-rays? I have to say you are absolutely right that it is ridiculous that you have not had an individualised plan of care made for you. Can I say that had you been booked at the unit where I work, all that dialogue would have taken place. Arrangements would have been put in place for you to see the consultant anaesthetist who works with your consultant obstetrician. Perhaps they are planning to have all this done around the 36 week mark but it would be nice if you were consulted and kept informed. Have you got an appointment at 34 weeks with the consultant?

mears... i have another app booked with consult obst. at 36 weeks and no, he hasnt even asked what type of surgery I have had! iasked if i could have a csec due to previous back surgery and he said - 'sounds fine, book it with the lady outside' i have an appoint with the anethnatist(sp?) tomorrow to discuss spinal block - but thats it really. I was expecting a little more specialised care as you say - or at least some communication btw spinal and obst consultants... and since my last appoint is at 36 weeks, should it occur to him that he should speak to my spinal guy, he only has 3 weeks to sort it - thats if baby doesnt put in an early appearance..... this is why I have no confidence in whats happened to date. and this is without considering potential complications of the connective tissue disorder or my aftercare... fortunately I'm pretty clued up about physio, pilates back care etc... but I cant control the connective tissue thing! and like you say....some reassurance would be nice.... maybe they do leave it till the last couple weeks before going through things in detail.... but what if baby arrives early...they have no time to go through things thoroughly then! I am worried.

When you see the anaesthetist tomorrow, you could discuss your concerns with him. To be honest he might be more clued up than the obstetrician. There should be someone there who is able to arrange an earlier appointment with the consultant - will a midwife be about? She should be able to arrange it for you. Good luck.

Just a quickie, if you live in MK, your nearest teaching hospital would prob be the |John Radcliffe in Oxford where I work. It's most likely too late for you, but if you were interested, I could give you contact details for consultants there who I would recommend.

Sarah x