Suggestions for improvements to an NICU

[Laura2919]

I lay in bed last night thinking about all this, and decided that one of the things I'd like to see is the production of an NICU Handbook for our unit. For example, the phone numbers for individual rooms (nursery, high dep) are pinned up on the walls, but you never remember to program them into your phone. Other things I'd want in it are:

• Visiting hours & restrictions (two people max) clarified and reasons explained
• Transport links - details of buses at weekends when the hospital bus doesn't run
• Car parking explained - took us weeks to find out we could get free parking
• Map of rooms in the unit (BF rooms, kitchen)
• Map of local area with bus stops, local shop, cashpoint
• Contact details ("advert") for Counsellor (found this on a wall) and the hospital Social Worker
• Daft things like the staffing structure (what are Registrars?) and the colour coding of the uniforms (dark blue for medical, green for surgical, white for students)

I'm sure I'll think of more, as will you ladies!

Thanks for all your responses so far.

For the 1st two weeks that the twins were in NNU they didnt bother to tell me because they are in hospital I get the car park at £5 a week. I think I spent about £60 on car parking
The visiting is awful. My sister worked evenings and only see the girls about 3 times in the 4 weeks they were in there because we could only have visitors after 3pm. I think there should be something like a room that you can wheel the baby into (in an open cot) and spend time with the family once the baby aint got anymore wires.
We didnt have anything for counsillors or that at ours x

 

[Laura2919]

I think the thing that does and will always be with me is that they are a bit rude.. Well definitely some were!

 

[ellie]

Hi Marleysgirl, hope you don't mind me chipping in, although my LO wasn't prem he spent 8 days/nights in NICU.
Overall we thought they were very good, but there were some improvements that could have been made.

Was there anything your Unit did/had that was particularly good?
- They had a big board with a 'tree' of staff, photos and names so you could work out who was who. However this was quite out of date and loads had left / new ones joined that weren't on there. So only useful if it's kept up to date.
- They had open (24hr) visiting for parents.
- They had a few portable privacy screens and were pretty proactive in offering them to mums for breastfeeding / kangaroo care etc.
- There was a nice little bf'ing/expressing room and the staff were pretty proactive at giving you the kit and explaining what you could use and how it all worked etc. (Although, I didn't really have any milk for the first week, so I found the expressing difficult and was told by one nurse that I probably wouldnt be able to breastfeed because of this )
- Good aftercare, we had a visit from a liaison nurse and a few follow up phone calls with the option of having more visits from them.

Was there anything that was really bad?
- As with every unit, hit and miss when it came to staff. Some were great, some pretty disinterested (and sorry to say, but some with very poor language skills, which must be tricky for a job where you have to be particularly sensitive)
- There wasn't a key worker type system, so staff got randomly assigned to babies on each shift. So you might have one nurse that was really good one day, then the next day she might be sent to another room or something. I don't know whether this is standard practice (that nurses get rotated), but we found that there was no real continuity, you would often get staff that didn't know your child at all whilst one that did was unavailable to you This also meant that you often couldn't find out any information about how they'd been or what the plan was.
- There was little open communication about what was actually happening. This may be down to poor links with the maternity wards. So, I was taken to a recovery ward after my emergency section, whilst LO was taken to NICU. I was told this by OH on coming round, and had no information on the ward I was on about where my LO was, when I might be able to see him etc. I had to really push to get to visit him the next day, and staff weren't that forthcoming when I got up there. It took a few days for me to find out that I could in fact visit him at any time. And we had no idea even why they were keeping him in - we had to push to see the consultant, but when we did it was massively helpful. But this meant we had a few days of being clueless as to what was going on or what the plan was.
- A handbook would be a great idea. We had a leaflet about the unit, but it said little other than 'there there, we know you're upset that your child is here'. We needed to know what their staffing policies were, what their discharge policies were (took days to find out that it was at least 48 hours of unassisted demand feeding, so we were told initially he would come to the ward with me on day 3, when in fact they weren't even considering discharge as he had an NGT).
- Ward rounds - whilst 'rooming in', I was there on my own in a tiny room, and the ward rounds consisted of about 8 staff crowding in with clipboards and staring at me while a different doctor every day prodded my LO. In my work I'm used to being in ward rounds as a member of staff, and I found this pretty intimidating. I imagine that those who aren't prepared for that would find this even more so. Any better ways to do this??
Maybe a meeting with parents and a named nurse (or ideally a consultant) as standard practice, as soon as possible on admission, to clear all this up?
- Better links with breastfeeding groups and better support for mums who want to breastfeed but who weren't given the choice . I never intended to FF but because of the birth circumstances he was given it for the first week. I was lucky that I happened to have a named nurse for the first day I roomed in that really got it going for us, and it's down to that that we're exclusively bf'ing now. But that was luck, as I had had no interest of any kind from anyone up till then; I had planned to try it when we got home, as they had him on such a strict bottle routine they had no room/time to let me try to breastfeed till then. I found this to be very poor and was very upset by this. Since then various bf'ing consultants have said they had tried to get better links with the unit (without success) so that they could offer support, as the staff are of course all under great pressure. It seems that local groups are only too willing but are not really welcomed onto the unit I saw one woman from Sure Start who came twice but they couldn't wait to get her out of there ...
So generally, better communication and transparency, between NICU and wards, NICU and patients' parents.

Also:
- There was no visiting for anyone other than parents, because of swine flu (?) This was fine for us, as we didn't want loads of family traipsing in and the place was very small, and Kalden was only in for a short while. However, I imagine that this must be very difficult for those who have LO's in for a long time.

Hope that helps? Good luck with the meeting!

 

[bumpsmum]

the doorbell thing was a huge pain I was in hosp for 9 days as my kidney's were gubbed basically and felt I was being a nuisance going down several times a day to put EBM in the fridge and tended to try and be in and out (no-one explained I could stay all day if I wanted )

Also it was 3 YES 3 whole days! Before anyone thought to tell us we could TOUCH HIM! Basic 'house rules' the first time you go to NICU would hav been nice.

More privacy when BF there were 2 of those curtain on wheels thingi-ma-bobs for 3 rooms.

I cant fault the nursing and care Matthew got tho they were great.

Lastly by the sound of it every unit should have their own 'Simon' xx

 

[Marleysgirl]

Lastly by the sound of it every unit should have their own 'Simon' xx

We had an "Ian" and a "Richard", and I have to say, both were absolutely great. Very capable, nothing fazed them.

 

[Laura2919]

I think its a shame that there seems to be a pattern about the staffing.. We had so many lovely nurses but sometimes when a miserable one walked in my heart sank!! I had one who used to look over at us as if we didnt know what we were doing.

Then when it came to Chloe and Jaycee's first bath I had a really lovely nurse who see I was really worried about moving her too much and handling her so she showed me what to do and when she thought i was comfy she left and came back and asked how i got on. She was a really lovely nurse and I will never forget how she treated us. Like humans not animals in a cage. x

 

[MandaAnda]

I hope you don't mind me commenting on a few of the posts. It's just that a few really jumped out at me. Oooh, and there's a link that might help your research/give you ideas.

I made good friends with 2 of the nurses who i wouldve trusted with my life they got me answers when i wanted them and sat with me when i was feeling down i know its not part of there job but it really helped.

Hun, that is part of our job. The babies need their family's involvement as much as possible to improve, so making sure you're ok helps to make sure the baby's ok. If we help you, we're helping the baby. And any neonatal nurse that doesn't think so needs to read up on family centred care.

Oh one more..when i mentioned a i really wanted to do kangaroo care one of the nurses said ''why would you want to do that, all this bonding stuff is aload of rubbish and then went off on a rant about how it was invented in columbia to keep babies warm because they dont have incubators and its all aload of rubbish basically!!!

Hun, I would seriously report this to the manager (or if you can find out who the practice educator is, usually a senior sister) of the unit. The Columbian thing is where we first twigged about Kangaroo Care, but it wasn't just some rubbish we heard about. It was the thing that got it all going - we realised there was something to it. There is evidence that it helps. So, she's denying evidence-based practice there and sort of violating her code of professional conduct.

olivia was desatting yesterday and one of the nurses kept sitting her up to try and bring her sats back up even though i constantly told her she desats more when she sits up, the end result was that she kept desating and needed more oxygen!If she had a primary nurse she would have known that if you just lie her down her sats pop straight back up!x

Again, this needs to be known by the practice educator or manager. Any neonatal nurse should know that sitting a baby up is likely going to make desaturations worse. They should be tried on their tummy if it's not a self-limiting desaturation (we should really let them try for about 20 seconds to pick up on their own, depending on how stable the baby is), as that splints their chest, making it easier to breathe (they're not working against gravity that way). Then, if they're still terribly desating, you would try wafting oxygen. If that still wasn't working, you'd flip them over onto their back into a neutral position, give IPPV (from a bag and mask or Neopuff). It's basic neonatal resuscitation.

Sorry, those last two just worried me. Anyway, I did promise a link. This is only in England, but it still may give others ideas. We have neonatal networks set up in England (so that there's not a million Level 1s in one area and the nearest Level 3 is 100 miles away, for example), and they're on this site. If you go to "Information About Units and Networks", you can click on any hospital, which will give you information about that particular unit. In the information for some of them, it has a link to the parents' information leaflet that the unit produces - if one of the units has some really good ideas, steal them! Here's a pretty good example.

 

[AP]

SIIIIIIIIIIIIIIIMON!

No hes all ours. Tough!

No he was a gem. One day I was really down about everything and I was having my dinner in the canteen. It was teatime for him too, he seen me and came to sit next to me.

He said he could tell I was down but I told him I didnt want to discuss it as he was on his break. He told me to just tell him anyway? He made me feel much better and FFS it was his own time, he wasnt working, yet he was still there to reassure me.

I was talking about that to OH the other day and it actually make me cry!

I hate slating the NICU, because its people like him that make the place seem like its full of angels looking after our LO's.

 

[Laura2919]

I didnt have a single male NeoNatal Nurse!! They were all women!! Oh well! lol

 

[Marleysgirl]

Well the first meeting turned into more of a "housekeeping" meeting, deciding where and when and in what form to hold the next meeting so ...

BUMP!!!!!!!!!!!!!!!!!!!

Just in case anyone new comes along and has ideas!

 

[Foogirl]

Positives.

• The nurses all seemed concerned about me and Mr Foo as well as Abby.
• "Visiting hours" didn't exist. The only restiction was at staff changeover, for about 30 minutes twice a day you couldn't go in.
• You could phone at any time of day you needed to.
• Nothing was too much trouble for the staff.
• Procedures and techical stuff was well explained.
• The nurse who was looking after Abby that day always came over to tell us how she was doing.

There are probably a hundred little things they did that made it easier, but as always, you only notice the bad stuff......

Negatives

• Parking (although free) was poor. It was hard to get a space most days - mainly because of staff using non staff car parks
• We had no kitchen so meals and drinks had to be bought at the canteen
• We weren't really given a tour of the facility, we didn't know the rules, what we could and couldn't do, who was allowed to touch her, where the toilets were etc etc I think a proper induction, similar to the ones you get in a new job, should be carried out and an information pack given.
• Name badges for nurses and something at the cot / incubator which tells you who is looking after your baby that day.
• Nurses call button. We had none and sometimes the place would be deserted when I wanted Abby out for a cuddle (or wanted her put back)
• Privacy wasn't too bad, we had mobile screens, but still not ideal.
• Outside space. I'm not sure of the clinical issues, but being able to have your LO (once they are bigger and stronger) on a wee walk in the garden would be nice - especially when it is absolutely roasting.
• Consistency. Conflicting information is not acceptable. All staff should be singing from the same songsheet.
• Door entry - we too had to wait forever to get in. There was a sniffy message at the buzzer saying only to press it once. But often it went unanswered. In this day and age can there not be a programmable keycard system, or even fingerprint scanner?
• Private space/ parents lounge. There was no option but to sit at the cot / incubator. Having somewhere to go sit and have a cup of coffee would have been nice.
• Webcam. It would have been great at 3 am if I could have logged on and had a look at her sleeping. Of course, there is always a downside to this.

Most of these were minor niggles and I wouldn't say they impacted individually, but combined they tended to make visits more stressful than they needed to be.

I'd also say that one thing all NNICUs should be doing, is having this consultation with patients!

 

[bumpsmum]

Nurses call button. We had none and sometimes the place would be deserted when I wanted Abby out for a cuddle (or wanted her put back)

Door entry - we too had to wait forever to get in. There was a sniffy message at the buzzer saying only to press it once. But often it went unanswered. In this day and age can there not be a programmable keycard system, or even fingerprint scanner?

Private space/ parents lounge. There was no option but to sit at the cot / incubator. Having somewhere to go sit and have a cup of coffee would have been nice.

TOTALLY AGREE - A good few times the nurses left the room and it was just us, no panic button, no phone, if anything happened we'd need to shout (when Matthew had his monitors off) scared the crap outta me!

The door entry system - swipe cards would have been fab, I mean the flippin travel inn etc has them, how hard can it be? I understand staff may be busy and not always someone at front desk but surely parents can be trusted with a card to let them in?

We were fortunate enought there was a parents room with comfy chairs, a tv, fridge, tea/coffee making facilites (had just been refurbished so not sure if this existed pre-paint etc) There was a basic 'waiting room' for visitors as folk tended to come in a car load and only 1 extra guest allowed in at a time (which i'd imagine happens with the average family)

Id like to add - (apologies if its been mentioned) somewhere quiet you can request to speak to a consultant or for staff to fill parents in on progress, more particularly any set backs as when in a room with say 5 other babies, we heard other families receiving bad news which could not have been easy for the parents.

Also, where its not possible for various reasons to visit the unit prior to birth, a 'virtual tour' or a more specific website would be very reassuring. The website for our hospital only stated it HAD a SCBU, THAT WAS IT!

Sorry folks, mini rant over ,was this exact time last year I took unwell and could not find any info on what to expect, except here of course xx

 

[Marleysgirl]

We're thinking of two websites - one on the official hospital website with downloadable leaflets, staff lists, official information; and then a link to an unofficial "Friends of the Unit" site where we can have a discussion board, information about surroundings (shops, hotels, transport). I may suggest a video on the unofficial board - when people have posted on here knowing that their baby will be going to NICU, respondents (including myself) have suggested that they take a tour of the unit before giving birth so that it's not so scarey. A video would be good for those who cannot do so.

 

[k4tie]

My NICU was terrible:

Each shift change bought different ideas, morning shift would take his ng tube out & put him purely on bottles, afternoon shift would put his tube back in and be 1 bottle to 2ng feeds, night shift would take his tube out again. 1 day he had 5 ng tubes in and out!
The staff need to communicate and all work from the same book!

Staff don't need to be so rude, and make you feel stupid for asking questions which they can't explain properly in the first place.

Cuddles were not encouraged at all, if we picked him up we were asked what we were doing and to put him back.

I hated him being in there soooooooooooooooooooo much!

 

[Foogirl]

I hated him being in there soooooooooooooooooooo much!

I'm not surprised. That sounds terrible.

It does sound like some sort of firm care plan should be written and updated for every baby.

 

[bumpsmum]

K4tie that was a real shame - 5 ng tubes in a day is alot, Matthew used to always pull his out and had 3 or 4 done one day and that was bad enough as he really fought against it going in.

Sounds like they really DO need a care plan for each baby to offer consistancy. Id name and shame them if it was me xx

 

[CazH]

A couple of improvements i would ask for would be
a private room to cry or recieve sensitive news,
bigger family room for visitors to wait in.
To have a seat by the incubator/cot
Def a swipe system to get in as could be waiting FOREVER to get in.

 

[Olivias_mum]

Hey how are the meetings going?is there a parents handbook at st marys yet!?x

 

[Lottie86]

Ours had an alarm system that if someone had a mobile phone on in the unit the alarm went off saying to turn all phones off which was really good

The only 2 people at the incubator/cot 1 of whom had to be a parent was a bit of a pain as my Dad and his OH at the time travelled a couple of hundred miles to come and see Findlay and my OH had to sit in the waiting area with my Dad's OH whilst I took my Dad in to see Findlay and then we had to swap so my OH and my Dad's OH went to see Findlay and I sat in the waiting area with my Dad.

The waiting area only had a few seats and they weren't comfy which wasn't great when doctors were doing rounds and parents other than the baby who was being discussed all had to leave the room. Comfier seats and a bigger waiting area would have been good.

Our unit had a small family room/lounge with a tv and lots of toys for young siblings to play with (and when LOs were in the nursery bit of SCBU you could take them into there in their cot for a bit to have some 'normal' family time with them). It also had a quiet room for sensitive/bad news or parents who just needed a break from stressing.

Some sort of fingerprint/card scanner to get in would have been good as you had to wait ages at times for someone to let you in or out.


I must say though that our unit were fab, we were shown where everything was on day 1, they sorted out the free parking for us (designated spaces for NICU parents would have been good so we could actually find parking would have been good!), they always checked if we had any questions, as soon as we arrived each shift the nurse who looking after him would come over and tell us it was her looking after him that shift and give us an update on things and they always asked how we were doing and I was told on several occasions when I went in the morning that they did not want to see me back there until at least the following morning (as they were concerned about my health).
I really appreciated that Findlay was always Findlay and never 'the baby in incubator number 2' to them as I have heard that some units can be quite bad for staff not knowing exactly who your baby is.

 

[Foogirl]

I'm glad this thread was resurrected (thanks Lottie) It has reminded me that I am meeting of the Parent Network next week. Does anyone have anything they'd like to add about the quality of care / resources available to parents of children in the NNICU?