Dealing with Multiple Diagnosis and Keeping everyone informed?

[PeppaPigObsession]

DD is 2yrs 2 months and has Global Developmental Delay of around 5-6 months, Speech Delay, Hearing Problems, Asthma, Squint in her eye and Hip Dysplasia in both hips. I've recently also become concerned about her skin as she seems to be peeling on her neck and on her hands so the doctor is referring her to dermatology and also the allergy clinic as Nursery thought it might be an allergy as it only seems to flare up at certain times.

She now has referrals into 12 different places at 3 different hospitals, has 2 health visitors (as her original one dropped to part time so she has a 2nd who attends meetings and things on the 1st days off) and Social Worker. She is also obviously registered at a GP surgery. And she's also attending a private nursery 3 days a week.

How do those of you with children with multiple conditions keep on top of everything? I really struggle to remember who knows what, everyone always writes to the GP and/or HV and they pass things between each other (based in the same building so easy to photocopy/scan things in for files etc) but separate departments won't always inform all of the other people she's referred to about what's going on with them. And no-one ever informs Nursery, or writes to them.

I spend my life ringing Peter to tell them about what Pauls said, and then photocopying/scanning reports written by Paul to send to Jane. DD does have a pediatrician but he felt that it was the individual consultants/nurses job to inform everyone else.

I have tried just leaving it, and just letting Ophthalmology only talk to Audiology and ENT (next to each other in the same hospital), while Orthopedics act alone and only speak to Physio (different hospital to the above and Physio is somewhere else again), SALT (different appointment again) only speak to the HV who made the referral and Respiratory only speak to the GP but then when I attend appointments with DD I spent 90% of the time finding reports for them to copy/add to files or being moaned at that they need to know what's happening elsewhere to effectively treat DD- I do know what they mean, because her GDD and SLD are influenced by her asthma because if she gets ill she regresses/struggles, her asthma also affects her hips because if she's ill she tends to gain weakness in her hips. And she has a physical delay with the GDD so it is obviously effected by her hip condition so they need to know what Orthopedics and physio are doing etc.

So what system can I use so I'm not repeating myself to everyone? Not all departments have email addresses so I can't send the report out to everyone at the same time, and my GP surgery won't accept confidential information over email anyway.

I currently have a folder with DDs name on with all reports/emails/letters/appointments on, but it's quite full already (she's had some referrals since 6 months old), and it also doesn't take into account her Nursery etc.

So what do I do? I want everyone to know everything as they all want to know it, but I'm bogged down constantly making phone-calls to have things to her files and I do also have to attend appointments with DD.

I'm an LP if it helps, so anything that saves me time would be a big help.

Thanks

What happens for us is that everyone writes to the GP, so I'm pretty sure that GP has a complete record of what everyone has said. Our paediatrician sends copies of my DD's clinic letters to every other consultant DD sees (addresses are all listed at the end of the letter). Most consultants copy in all other consultants (or at least the main ones) but they always copy in the paediatrician, so again I'm pretty sure that paed has a complete record. Paed is more important to us than GP and that's the Dr who we rely on seeing the 'big picture'. I think your paed is right, but perhaps could help by writing summary clinic letters and copying in everyone his/herself? I've never had to aid communication between any Drs (many, many of them over many years) so something is definitely not working if you have to do this. I've found communication to nursery didn't happen and then later at school, things get sent to 'school nurse' but never make it to school. I've always copied relevant letters for them or have written a summary of what they need to know/do. Keeping a folder of your own as you do is useful. I also write a summary occasionally when there is a lot going on or seeing a new Dr who will want to know history (can't rely on my memory!). Hope you get the situation sorted

And actually you have to get used to repeating yourself all the time (even when all letter are getting sent to everyone)!