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Giving Brith, staying in hospital with additional needs(16 Posts)
So I tried to broach the subject of DH staying in with me past visiting hours as I can't use the loo on my own or transfer into my chair - which will probably be on charge anyway - without assistance. I've got HMS and if I'm moved incorectly I get injured. Consultant was a bit patronising about me going to bed at 9pm and that's it, I'll be in bed most of the time anyway, it's where I spend most of my time at home, but I can't sit up or roll without an aid or a person. I've had the 'can't give you special treatment line' that people trot out for disability. Actually it would be lovelly not to be joined at the hip with DH for a couple of nights, for someone else to take over his role, for him to get some sleep and just concentrate on being a new dad rather than a bloody carer. It's not about him being a new dad, it's about me not being handled incorectly or being left unable to lift baby/get water/go to the toilet/pick something up off the floor/sit up.
Consultant seems to think the midwives/nurses on ante-natal/postnatal will be abel to deal with all this. I'm not convinced, do I push for them to 'break' the rules for me if so PALS?
It depends how busy the ward is to whether they have enough time. Last baby I had I was on crutches but had a drip in making it difficult to use my hand. This plus section wound meant I needed more help getting up & down. The staff didn't really have time for this although they were used to helping.
Are you having a section( planned admission)? Or natural birth ( unplanned) as that make a sifference.
my first thought is that they should give you a private room and allow your dh to stay with you, it seems the obvious solution.
esp as you say others may not be able to move yoru safely and your dh knows how to do this.
Personally I would be speaking to the head of midwifery. The consultant will in reality have very little to do with your hands on by the bedside care. Speak to the midwife in charge and get a plan of care in place.
If you have no joy speak to PALS before you go in, you should be having not 'special' (grr) treatment but at the very least treatment which meets your needs.
Given the short staffing on the wards generally, I would imagine that they will look to accomodate you.
I'll be having induction - so antenatal ward will know when I'm going in but postnatal won't. Consultant already mentioned how busy they were which is why I can't speak to anyone on the wards aparently. So they don't have time to find out what my needs are, but they will have time to meet them??
Will ask to speak to head of midwifery next time I am in, if not then will speak to PALS - yes the 'special' got on my nerves, I'm really asking for a lot to be abel to sit up and go to the loo safely arn't I
Err yes actually they can give you 'special treatment'... That's another name for ' treatment'! Since when did treatment mean everyone has the same? Do they give csections 'special treatment' when they are monitored more & stay longer? Do they give people without the use of their legs 'special treatment' when they are 'allowed' to have a wheelchair by their bed?
I HATE the way people try & shame you into being treated unfairly & unequally by oh the awfulness of asking for 'special treatment'. DAMNED RIGHT YOU ARE ASKING FOR SPECIAL TREATMENT - you have different (or 'special' needs)
Grrrr... Takes out anger for prejudice against 'invisible' disabilities on this thread
Maybe that's one of the problems, I'm a wheelchair user - so part of my disability is very visable, the fact I can't walk or self propel. It's the injury, pain, fatigue and fragile nature of my joints that you can't see. People assume the wheelchair is my 'problem', the wheelchair is a godsend - it's everything else they can't see that's the problem and they don't want to know about it. So yes Grrrrr to ignorence of the invisible parts of disability even when it's obvious you are disabled.
I don't know how close you are to delievry but it may be worth get the number from the switch board for the HOM and arrange an appointment time to see her. So you don't miss her/ clash with her leave dates etc etc and she will be able to meet with you.
I think given the consultant complete lack of awareness you DO need to have everything clearly documented and signed off by someone in authority.
Keep pushing (although you REALLY should have to!)
Ah Trickle it's rubbish isn't it! Have debated getting wheelchair as it makes people understand a bit more but how rubbish is that! To need to do that alot sooner than I medically need to just to get peoples ignorance out of the way . Sigh. Won't give in yet but oh it's tempting to slide into a comfy chair & get wheeled away on a fuzzy waft of prejudice & vague warm hearted ness, sounds nice just now (had a tough few days) fighting nhs & council).
Anyway OP you do need a plan or you're stay in hosp will be miserable & you'll struggle more than you should. Side room & DP staying sounds most practical for you & also low effort for ward. This plan needs writing on your notes, set up as much in advance as possible & repeated parrot fashion til you get it!!!
Repeat to self 'I have a chronic illness / disability which means I have special needs whilst in hospital (& labour). I am not asking for too much, I am asking for what I need for basic functioning' repeat ad nauseum to anyone who will listen.
Good luck & pls tell us how it goes...
You have special needs, why shouldn't you get special treatment?
Thank you doublelife and Doris, that's made me feel more like I can push actually - you know how it gets, you start questioning wether you're making too much of a fuss, but I'm not. ljny I may borrow that if they start on about 'special' treatment again
I'm 6 weeks off induction and I have two battles to fight atm, to get them to recognise I WILL be giving birth on my knees as it is safer for me unless something medically significant happens they have no say in this matter as I have mental capacity and am abel to make my own decisions (thank you P.A. for correct waffle). And to realise that I will be a big drain on them if they don't let DH stay.
I have managed to wing an appointment with the phisio who apparently has some pull in these things. I will try her first and if no luck will try for HOM and then PALS. Honestly I tried to start this discussion at 28 weeks and they were having none of it, just shut me down this time - they are obviously planning on ignoring it till I'm discharged grrr
Thank you so much for you help, I feel like I know what I'm doing now, I'll let you know how I get on, seeing the midwife on thurs 2nd (same day I get my shiny new indoor NHS powerchair whoooo)
double I'm afraid as far as other people go, once in the chair you loose them treating you like you should be abel to hop out of their way while hobbling on crutches and/or be abel to do everything as fast as they can just with an additional support and meet a whole new world. In this new world you become an object they can lean on, move out of the way (v. funny when they try to do this to you in a powerchair - not so much in a manual), they expect you to hover off pavements or magically make yourself smaller. I've had people walk infront of me and stop dead then look at me like it's my fault I bumped them when I couldn't stop instantly, ignore you totally asking them to move so you can get passed. 'Oooo don't you drive that well' - and it's variations get really boring, I've yet to pluck up the courage for a 'yeah a bit like you manage those legs' one day I will
My main advice is whatever the problems don't leave it too late, like to where you are crying everytime you come back from a shopping trip and put yourself in bed for a few days (I have never done this )
Anywho - here's to the 2nd, even if the phisio isn't great I'm getting swanky new wheels!
Good luck, please do push them now before you are in hospital, be really persistent & get a plan written somewhere you can point to on the day.
God I so understand where you are coming from, in so many ways, first point it would be nice to not be joined at the hip with husband who is also a carer. You feel total guilt when they do so much don't you, I hate seeing him have to run around. He will miss you though, my husband missed me and our new son when he had to go home.
I ignored visiting hours hahaha too many years of living as a child in hospital etc you get a bit confident and think oh whatever! You provide a nurse to stand by my bed every ten mins and husband can go home, they don't like that option, let's face it they can't afford the staff for that option at the moment. So first off get confident, if you need more care than you know they can give then when the visiting over bell goes, ring your buzzer and in a non questioning voice say my husband will have to stay for another hour as I need more fluid he needs to help me get to loo afterwards, help dressing and help making sure our child is ok ready for night staff etc.
Secondly usually the nurses try their hardest, they really do try bless them but they are not kitted remotely for special need parents. So as long as all goes well from day one start saying this is silly me being here, there is nothing geared up for me to use here to care for my child and yet at home I have all I need and my husband. They understand and it means they push for the doctor to do checks quickly and try and rush your home time as fast as they can. My son was premature but very healthy, born by c section deliberately planned due to. Y curved spine, tiny form and week replacement joints etc. I got a normal bedside baby cot which was actually not to difficult to use as the sides are not high and although my arms are fixed at ninety degrees I could still manage to get son out. Bring a v pillow with you, you will need it to help rest baby on for breast feeding. Take easiest nappies with you that you can find,I found Tescos newborn nappies were easiest to do with poor dexterity. Keep dressing baby simple, there are Velcro newborn and prem baby vests in Mothercare.
Night staff are great, they do help, they took my son off to feed him as the realised I struggled to walk and move independently. They do what they can, the clinic staff don't really have a lot to do with what goes on on the wards other than medical care. Don't feel the ward staff will be similar. They do listen and they try hard. They will let your hubby stay on if they can. Obviously he is unlikely to be able to stay over night but then the night staff are about, I just buzzed and they were happily there however much help I needed.
Try not to worry, it will be fine x
P.s me with curved spine and replaced joints I meant, clearly if your baby is ill going home has to be delayed!
Thanks sunny have added Tesco's newborn nappy's to the hospital bag list (still not done even though I'm 37 weeks on monday ) I'm lucky that my mum has bought me some of those night dress style newborn bags - no poppers, zips or fiddly bits just elastic at the bottom and some built in scratch mittens should they be needed.
I also have good news phisio spoke to all three wards and antenatal have agreed to DH staying passed visiting hours regardless of wether they have managed to get me into labour or not. Postnatal is hoping to discharge me before it's a problem and will probably overlook things as long as I keep it quiet. Labour ward have written up a plan too for which rooms/beds are suitable ect ect so looks like things are as planned as possible.
The consultant is all for me going home as quickly as possible (baring any ill health for either of us) - we are singing from the same hymn sheet on that one as she does understand everything I need is at home. Glad to hear the ward staff are understanding about that too. I ended up being monitored on antenatal ward a couple of weeks ago and getting me DH and bump into the 'accessible' toilet/shower room was a nightmare so glad I was only there for a few hours.
I'm going to randomly moan about how I have a bloody DLA renewal pack to fill out, while off meds and reciving no treatment due to pregnancy Grrrrr. I guess I'd be complaining more if I had to fill it in with a newborn but it's still a PITA. Now worried my income is going to drop significantly (I don't have a great history with DLA I've been to three tribunals in total in the last 6 years and could have done more but I gave up on getting high rate care and that is WITH legal advice)
I have my new wheels, though it's unlikely I will have passed my test to be abel to drive outside in two weeks . I am however allowed to take it in a taxi and then use it inside the hospital This is very good news as my manual makes me totally dependant on someone for any movement and the old powerchair has started with both erratic batteries and steering - it just swings to the left randomly which is a little dangerous really.
Getting close now, I can't lift my legs anymore so I think babys head must be very low!
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