To file an official complaint?

[Tulio]

I’m laying here with my newborn baby on my chest thinking back to my 20 week scan. They ‘couldn’t get a good view of the neck/spine’ so told me to come back in for another scan. Which I did, completely trusting it was just because the baby was in an awkward position, as they said.

Second scan and the technician tells me there is a cyst in the baby’s neck, ‘a pretty large one’ she says she’s ‘surprised they didn’t pick it up on the other scan’.
Anyway she was very matter of fact about the whole thing, so I wasn’t too worried. She wrote on my notes cystic hygroma followed by a question mark. And told me I’d have to come back for a consultant to scan me.

So obviously I google cystic hygroma when I’m in the waiting room and, well, if you know what it is, the prognosis is pretty horrific. Most babies die and when they don’t it often signifies severe illnesses and genetic problems. Was on the verge of tears at this point, when a nurse comes over and instead of taking me into the private room they have (yknow the one with the big box of tissues), she starts talking to me about the scan and what was found and the consultant appointment, in front of the very full waiting room. I was a bit shellshocked at the time but so annoyed afterwards.

Anyway would IBU to complain that the ultrasound technician wrote cystic hygroma on my scan notes she gave to me? Even if she did put a question mark.
The consultant appt wasn’t until after the weekend so I essentially spent 3 days crying, thinking I’d have to have a termination for medical reasons. She’s not a doctor, she shouldn’t have speculated. And it wasn’t a cystic hygroma, so all that stress was for absolutely nothing but someone’s opinion.

What do you think? The more I think about it the more I want to make sure they don’t do the same to other couples. Should I file a complaint, would I have grounds?

@wineconnoisseur ahhh so that question mark is key haha. Thanks for responding and glad everything is looking good for your little one!

I think the mistake you're making is thinking that "my folder" means "note and information for me to use and make whatever inferences from".

Our notes folder are notes for each professional we see so there's a log ig you're going between practitioners, hospital or even trusts (we have a lot in our area who fall undr one trust for community midwifery but are delivering in a different trust). If you became unwell and went to A&E then the notes re there for the A&E doctors to see.

Ultimately, you chose to Google something based on a question marked observation and are now trying to blame the healthcare professionals for the stress caused by your internet actions.

No she wasn’t a doctor, but an ultrasonographer and very much qualified. Of course she should have written it in the notes, that’s literally what the notes are for? Enjoy your baby and stop worrying and fretting over something which luckily didn’t happen.

OP, I get the worry and the natural inclination to google everything, I do the same. I responded as I did because my baby does have medical needs. She’s 7 months and has already had operations, a stay in NICU, and suffered birth injuries that will affect her for the rest of her life. So, I feel you are unreasonable to want to complain (or dwell on) something that caused you maybe 3 days of emotional distress but actually turned out fine.

Just snuggle your baby and let it go. Be grateful it was nothing.

I'd be genuinely interested to know what you do for a living OP..

@HoppingPavlova biro was just to indicate it was an add on that wasn’t put through the computer that’s all. I have nothing against biros 😅. In my eyes just putting ‘cyst in neck’ and the measurements would have done the job. The consultant immediately dismissed it being a hygroma, it wasn’t in the right place.

There are implied connotations with any diagnosis, so to write one without explanation, obviously you’re going to look it up. I’d be amazed if anyone wouldn’t.

And yes I also looked up cysts in neck generally; the thing is that the term she wrote down is the very worst reason to have a cyst in a foetus’s neck, so I’m not sure your point about googling lots of things being worse stands...

Also I know it’s a buzz word, but I’m not talking about Dr Google - i scoured the NHS website, Great Ormond Street, well respected sources.
And really I’m speculating based on her incorrect speculation. The facts I read were founded in science. It’s just that she was happily wrong.

But based on the comments of others about the medical process, it’s just the way things are done!

The lack of privacy would be the issue for me. The sonographer was being thorough, and you really should never Google things until given a firm diagnosis, and even then I would rather just ask questions of the consultant or professional.

@KittyKel yep I’m inclined to agree with you! My natural reaction is ‘well it all turned out okay in the end’ or will do when he has his op 🤞🏼

But was just going through everything with my health visitor who brought up the complaint idea which is why I wanted to see what others thought. But it seems that’s just the way the medical world rolls! I’m just lucky enough to have only had one speculative diagnosis!

Thanks for replying!

@Loaf90 ooooo how come? I feel like this is going to be good. What do you do for a living?

My sister had a similar situation and the HCP did say to her "don't google it".

Obviously she did and get worst case scenarios but that was her choice really...

Maybe raise that the nurse didn't invite you to a private room when you were visibly upset (maybe it was in use?) but I don't think you can reasonably complain that a medical professional wrote a medical term on your medical notes and you googled it.

I think you should raise that you weren't given privacy. Not sure about the other issue. Perhaps you could say how it made you feel but you appreciate their position and need to communicate. Mind, most notes are online now surely (well they are at my hospital. Nobody took much note of the hard copy ...)

75.93% of the NHS budget is spent on compensation. Go ahead op

I would complain; the level of risk was not explained to you, nor was the meaning of what she wrote so it was predictable that you would scare yourself with Dr Google (Dr Google can make a cold into a life-threatening condition after all). I think they could do with considering how they improve communication with patients to reduce stress - which includes cryptic remarks on notes.

from experience I take any nurses word or health visitors with a grain of salt. One of mine went into hospital with gastroenteritis type symptoms, only 6 weeks old. A nurse seriously came in and told me after tests as he had elevated e.coli in his stool samples that the health authority was 'probably' going to issue a quarantine for a notifiable disease; i.e coli O157. He had norovirus. I asked for the doctor and he was perplexed as to her diagnosis.

Then a health visitor said the reason my son was feeding too much was because of a tongue tie and stuck it on his notes. I said he does not, scratch that now, she wouldn't. I brought him to my GP 2 hours later and told her I would, my GP scratched the notes and said quite unbelievable, not a single pointer to a tongue tie. Anyway etc... etc... always see the doctor not the nurse.

You can complain about the lack of privacy.
Other than that I don't think they did anything wrong, probably could have communicated with you in a better way to avoid unnecessary stress, but you won't get anywhere complaining about them writing '?cystic hygroma' in the notes.

So my interpretation from my experience of pregnancy was that the co-op card as it was in those days was noted and carried with you in case you came into contact with medical professionals/required medical treatment during your pregnancy. So it was written on the Friday and you saw a consultant on the Monday. You could on the Saturday or Sunday required medical treatment which if you were in another area of the country as the NHS computer system isn't linked up wouldn't have known about a potential diagnosis for your baby. This may have impacted on a particular course of treatment. So I don't think it was wrong to write the potential diagnosis however I think it could have been handled better. The notes may have been the only indication if for example you were unconscious.

I would spend every second enjoying your baby and forget about this completely. It will make you irritated upset and anxious when you will be happier feeling calm and relaxed.

If it’s really eating away at you, fire off an email and leave it.

I had this at my 20 week scan. Was told devastating news about our baby. She even went and got a second opinion and they also agreed.

Waited week and a half to see a consultant (mainly my fault as we were off on holiday a couple of days after scan, which was spoilt due to worry anyway).

Saw the consultant who said our baby was fine.
He also said that some sonographers aren’t as thorough as they should be. So he’d seen this sort of issue before.

However, I didn’t complain because my baby was ok and I’d rather a possible issue was raised to get help early on, than it being missed.

Butterisbest I have complained several times and on no occasion has it occurred to me to think of compensation. What I have looked for is changes in systems to ensure my experience wasn’t repeated (repeated lost referrals, poor communication, system failures). Potentially changes made in response to my complaints could have saves the NHS large amounts in clinical compensation to other patients.

I think the complaint should be lack of privacy however the other room may have been in use. Just wanted to add that any entry into medical notes needs to be made in biro legally. And the job of radiographers is to make their opinions based on what they see and suggest diagnosis. Unfortunately with midwifery there is the need for handheld notes so you read the speculation prior to diagnosis, the point of the handheld notes are so they are accessible quickly wherever you go in case of emergency

Sorry to hear you went through such a scare- waiting for tests etc is awful and feels inhumane.:( So glad things worked out fairly ok, and best wishes for your LO's operation.

I don't get why anyone would ask what you do for a living. That's kind of irrelevant, seems to casting aspersions of some kind- rude. You sound an intelligent and reasonable woman, who went through a perhaps unduly distressing experience. You haven't come up with this entirely off your own bat after all- your HV said it could be a good idea.

I think you should ask your HV what she thinks was inappropriate about how they acted- she obviously thinks something was, and she would know.

Then if you feel like it, complain. There's nothing wrong with complaining, it might help them improve how they operate so other mums in the same position aren't so distressed- which is a valid goal for you.

Either way, hugs and best wishes xxxxx

If I were you I certainly would write to the hospital with some feedback, you feel you weren’t treated in the best possible way and you think you know how they could do better in future.

They can then either act on your feedback or decide that they have reasons for doing things the way they do and they won’t change anything, but if you don’t give them the feedback how will they ever know what impact it had on you?

Today 22:34 Butterisbest

75.93% of the NHS budget is spent on compensation. Go ahead op

Source please.

OP I would complain about the lack of privacy. (Or actually given my Antenatal experiences and lack of action I probably wouldn’t, but I wish I would!)

I also received possible bad news at the 20week scan and had to wait over a weekend. I was very anxious. I didn’t google because I new it would make it worse. I think you were mad to try and investigate the words written tbh but I understand the upset.

I’d complain about the nurse before the tech.

I'm a HCP. We write in your notes in case you are seen by someone who doesn't have access to our systems. That's why you have paper notes so they are portable, and you can show whoever needs to see them. We use a ? to mean query. So ? Norovirus means I'm querying if you have Norovirus. It's not that I'm certain that's what it is.

I'd say you have a right to complain but I wouldn't complain personally about the notes much more around the privacy aspect. Although you are free to complain about whatever you want.