Admin & Discharge information

[DdJames]

I am in the process of developing new admission and discharge packs for the Neonatal unit I work in.

I really want them to be useful and serve a purpose, so those who have experienced the Neonatal environment what information did you find really helpful, not so helpful or that you wish you'd been told.
The discharge stuff will cover babies first year so will include weaning, immunisations and maybe some local information.

Thank you

I can't remember getting a discharge pack - I probably did but was too busy elatedly running home with DD! I was thoroughly impressed with the whole discharge routine though, I was so impressed with the time the staff took to run through everything like bf, demonstrating bathing, sleeping, follow up and particularly the CPR and choking first aid course that I was offered that I don't think I had any other questions at the time. Info on immunisation, weaning and whether to do stuff at adjusted or actual age (like giving which age calpol) would have been hugely helpful though. I'm sorry I'm having a blank re admission stuff. Again everything was very well explained face to face. They had a lovely wall describing the types of problems faced and how long babies usually stayed in hospital for per week of gestation which I thought was really helpful just to get an idea of what on earth to expect and just how long we'd have to be there for. Sorry not to be more helpful!

Some sort of checklist on admission to makes sure you'd been shown round the unit, told about parking and any passes, about any free taxi service avaliable, breastfeeding nurses, how to use a breast pump and so on. We missed a lot of this and only found out throgh conversation with nurses.

Well, we got no information at all on admission or discharge, so anything would have been useful.
On admission, written info on hand expressing, what to do with your milk, parking, how the unit works etc - just to remove that terrible feeling of having no idea what to do with yourself. Oh, and how it will work for the mum - I felt like postnatal didn't give a stuff about me, and after a pph, I was dragging myself round to scbu, missing meals, and it was really awful.
On discharge, a summary of what your baby was admitted for, their state of health at discharge, what to look for, who to contact, and whether there will be any followup after their admission to neonatal. And who will be seeing you and when.

ds was in SCBU for a week, and tbh no one really explained what was going on, and we were discharged straight home with no visit for 5 days, so felt really adrift

On admission I think it would be good to give the pratcical information, parking and discounted parking (I found out a week later due to talking to mums) where the parents room is, where the kettle toaster etc is, information on breastfeeding, expressing who the lactation consutlant is if there is one, where on earth to hire pumps from assuming the unit don't give them out, If relevant for the parents what arrangements there are for associated hostels on site when the mum gets discharged in advance of the baby. I agree that its crucial to explain what will happen with the mum. Like CMOT postnatal didn't give a stuff about me, as i didn't have DS with me and like CMOT I missed meals left right and centre as I was in the NICU. Similary I used to go down to my ward when the ward rounds were taking place in the nicu to be told i missed the drugs round, and find someone and of course no-one was to be found.

Also info on the timing of the ward rounds, as well as on visiting restrictions for extended families and friends.

Finally on admission and introduction to the counsellors or failing which the number of the bliss counsellors.

On discharge the usual stuff on weaning, but also on any prem support groups, continued help with breastfeeding (normal bf support groups go oh a prem... er we don't know) on any drugs post discharge and the likely length of time your child will take them. info on what follow ups you'll get in both the community and also in the outpatients clinics/cdcs, info on common complications reflux, lung disease, development delay etc, cpr and resuss and in my view i think it is crucial to talk about bronchiolitus and readmission. I was anectdoctally told that DS would be readmitted twice which he now has been. It would be good for the unit to explain that this is normal, but also to explain that once you have an "unclean" baby who has gone home you are never admitted back to scbu even if its 2 days later and go to the childrens ward instead.

Great that you're asking for input, thanks!

Admission..... what times visiting hours are and who can come when. If/when you should stay away (e.g. have a cold). Hand washing - what is required on this unit and why its important. When ward rounds are and whether or not you're allowed to stay in for them. Where the parent room is and how to get hold of a coffee when you need one. How to discuss any grievences and how to get hold of a doctor when you need to get some answers (e.g. speak to reception and let them know when you'll be in tomorrow). any information on counselling, on-unit support e.g. breastfeeding and where the nearest pub is!!! also information about Bliss - that there is a website, a message board and a phone number where you can chat to someone who's been through it all before.

discharge.... information about who will follow you up and how to get hold of them if there is a problem. community nurse numbers, who to call for what problems. we came home on oxygen and i had no idea when to call the NICU, the respiratory consultant, the community team or the GP, although i had the common sense to know when A&E was appropriate! :) information about any groups for prem/sick babies like local Bliss groups or special needs playgroups. clear information on what to avoid when at home - e.g. we were told to avoid infection risk, not allow anyone sick into the home, and to avoid public transport and supermarkets. NICU reunion dates if you ahve that sort of thing (which I think is great - a sort of alumni party - and it can be a fundraiser too). agree about information on readmissions too - especially about what to expect - e.g. on NICU we were encouraged to visit as much as possible but not allowed to stay overnight, and the nurses would feed your child if you weren't there. in Paediatric wards they require you to sleep there overnight and if you don't feed your child noone else bothers. it was a BIG culture shock the first time we were admitted!!!

oh, and on admission or fairly soon afterwards it would be nice to have some sort of memory box or diary system where you can record what happens and keep mementos. i've heard of units giving out disposable cameras and things like that. completely invaluable for those parents whose children don't make it.

Hi, I'm currently in NICU so cant talk about discharge but some helpful stuff for admission has to be prompt clear help re hand expressing and using/finding breast pumps. A brief explanation of staff structure/roles ie who looks after your baby, who makes decisions about drugs and when you can expect to see doctors etc. Also it would be good to have VERY early warning that you might be moved to another hospital. Hope this helps.

I thought of something else - if a mum comes in with PROM / early enough in a prem labour to make it at all possible, and are of a gestation/estimated birthweight/condition to make SCBU/NICU admission likely, they should be visited by someone from SCBU to explain whos who, what might happen, and find out if they intend to bf etc. That way a woman who has laboured and is knackered/frightened/in pain isn't confronted with it all straightaway, and the staff know a little of their intents

Thank you so much for your input everybody.

I was also thinking information on Baby bath seat safety, Blind cord safety, Pond & garden water safety and toy safety would make an all round education package - would anyone have found this information helpful or are they things people will shove in a drawer and never read! I can do large displays with information - we currently have hand expressing and breast feeding.

Would you as parents be interested in reading things such as research into reducing the risk of cot death or investigations into problems such as drowning in bath seats if they were put in the parents sitting area or would these things worry/scare you to much. I know there is already so much going on when your baby is on a NNU and so much information to take in.

Hi Dd,

It's great that you are asking for input. I can help a little - I am the parent rep for a London neonatal network, and visit units asking for feedback from parents to give to the network board, and directly to the hospital. If your network has a parent rep it might be worth contacting them to ask what issues are flagged up by parents they meet - Bliss will know if your network has one.

Admission and discharge packs are one thing that used to be flagged up by parents repeatedly as things that could be improved, until our network improved them! I think all the hospitals in our network give out the Bliss discharge pack which is great - not sure how you would get hold of them. We also deal with a lot of transfers within the network (to and from different levels of unit) - I'm not sure if this happens where you are, but one thing our parents requested was information about reasons why their baby might be tranferred, and what the differences between units were.

Re discharge - one thing that would be really helpful is something about later health issues that are common to premature babies and what to do about them - eg reflux. My son had terrible reflux and I had no idea what to look out for, as it didn't emerge until he came home. Also the unit had all the cots on a tilt - which I didn't notice until our HV recommended it as a help for reflux. A number of parents I've spoken to have noticed the same thing on discharge. All the suggestions given above are great re weaning, Bliss contact details, what to do if readmitted etc etc. I'm not sure if general safety advice would be reassuring or not - that kind of thing can be quite easily found in regular childcare books etc, but things specific to prem babies can't. What I found hard was going from the constant monitoring (eg temp taking, weighing etc) of the SCBU to no care other than mine when I got home. I thought it was normal to take your babies temp about 3 times a day, and only stopped when the HV pointed out it was entirely unnecessary.

Sorry to waffle on - I have lots more I could say, but won't fill up the thread entirely! Feel free to pm me if you want any more information or want to know more about the parent rep role - the hospital I visit regularly has found it really useful as I give them anonymous feedback direct from the parents about improvements they could make and things they like, which they take on board - could be useful to get one for your unit!