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?

75.93% of the NHS budget is spent on compensation

I really don’t think so.

I wrote a complaint at my 20 week scan. I left in tears for a different reason and the sonographer was a right bitch, so awful.
I wrote to PALS they emailed back instantly and I wrote the email at like 2am and by 9am I had the lead sonographer from the hospital phoning me to have another scan. They booked me in with the lead sonographer too and she gave me about 30 photos. They do take it seriously so definitely do it OP! Rest of pregnantcy went smoothly, thankfully!
Congratulations on your newborn!

Pregnancy* 🙈

MEdical staff often forget about the human aspect of things. When DD2 was born by c section, I was in an absolute mess emotionally and physically....then a student doctor flagged a heart murmur with her...as I was so delicate, it completely floored me and I was struggling to cope.

About an hour later, I was just pulling myself together when a student nurse stuck her head through my closed curtains and said "I'd like to listen to your baby's heart so I can learn what a heart murmur sounds like!" All cheery with a big grin.

I almost screamed at her. I sent her away but I just wondered how she could be so insensitive. It was only a murmur...I see that now I'm not a couple of hours after birth...but right then, I was in such emotional turmoil and anxiety that I was devastated.

I think you should complain OP. It does them good to remind themselves of their positions.

"I think the sonographer was correct to write what they did, but incorrect to let you see it."

I totally disagree with this. We have a right to see our medical records. Yes, sometimes there are procedures to go through such as a subject access request, but encouraging medical professionals to be hiding things from patients is not good.

You could also just contact PALS as feedback rather than a complaint.

Mention that it would have been far better for the sonographer to explain that it's not a definitive diagnosis and the subsequent lack of privacy when dealing with the nurse.

It's not something that needs drastic action, just helping them see it from the patient's POV will hopefully be enough.

There are implied connotations with any diagnosis, so to write one without explanation,

Lots of people have told you in lots of different ways that there was no diagnosis at that point. It was a question to be further investigated to see whether it would lead to a diagnosis. You are the only person saying there was a diagnosis written in biro in your notes. There was not.

Even if ‘cyst in neck?’ was written in your paper notes you would have gone home and madly Googled cyst in neck and looked at worst case possibilities and been worried for 3 days until someone reviewed and told you there was no issue.

Congratulations on your baby OP!

I do think this was handled badly and unprofessionally and with a complete lack of sensitivity. Of course you would have been really worried. Even the remarks that it is large and someone should have spotted it sooner.. not what anyone wants to hear and it really undermines confidence in staff who you are supposed to trust.

If something like that must be on notes that a patient will see, then someone should have had the decency to explain it, not leave you hanging. And then to not take you aside when they did. Shocking. I know the NHS is in crisis, but compassion costs nothing except a small amount of time.

I'm not sure why so many PPs are happy to see you accept such a lack of consideration. I would also hate to see someone treated like you were, so I would definitely complain. And your health visitor would not have suggested it for nothing. They need to take better care of people.

Hmm it's a tricky one. I'm usually pretty anti complaining but this actually is enormously stressful you. I don't think there's much that can be done about writing in the notes - after all something has to be written down, and had it not said ? Cystic hygroma you may well have googled ? Large brain cyst or similar - something has to be written down.

The lack of privacy and the lack of opportunity to ask questions is an issue. It's very possibly secondary to lack of space, but if so maybe that needs to be highlighted to give the opportunity some time to change. Maybe more rooms can me made available, or better still, a consultant can be made available so necessary scans can be done in the same visit. Complaints are one of the better ways of enacting change, and it sounds as though your very stressful situation could have been managed better.

Difficult OP, but let’s say the US nurse saw something, wrote it down, and then told you to come back to see a consultant for a further scan, you’d have been panicking just the same.

The lack of knowledge would have been just as scary.

You could cost the nurse her job. Sure, the way she chatted to you in the waiting room was not great.

Glad all turned out well for you and your baby.

@Tulio I'm a senior nurse. You?

In my eyes just putting ‘cyst in neck’ and the measurements would have done the job.

Sorry medical professionals use the medical term, 'cyst in neck' is a) too vague and b) would not get you a scan with a consultant in 3 days.

Medicine and notes are, in some ways, the opposite of normal life. In normal life if something is 99% certain then that is good enough, in medicine if there is a 1% chance it might be something then it will be investigated.

The ? is also part of medical notes, it means 'query' so if your see '?x' it means, "is there any chance this is x?"

Oh and in between you being seen by the sonographer and the consultant someone would have looked at the recording of your US or the pic printed out.

or better still, a consultant can be made available so necessary scans can be done in the same visit.

Hilarious. Yes, please do suggest this.

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.
So your googling isn't speculating, is scientific and it's their fault you were upset.

But a qualified professional seeing something on an ultrasound, recording it as a possible issue on your notes and refering you to the consultant to follow up is then speculating?

Right. Ok.

In future I'm sure everyone would be really happy to have incomplete notes if they need seeing by other practitioners because someone wants to blame staff for their decision to go off on the internet instead of waiting for the hospital staff to do their jobs.

As a nurse who works in a hospital I'd say if it's something that keeps playing over in your mind you'd be completely fine to email pals and raise your concerns. As you said putting that there was a cyst with the size would have been sufficient on the notes you keep with you. The lack of privacy is also concerning. You raising this might mean it not happening to another expectant parent. Congratulations on your healthy baby.

I think you need to work out what you want from a "complaint." What do you want to achieve by complaining? The radiographer was doing her job, raising a query for your consultant to consider. Would you have preferred she didn't raise the query?

What should have happened differently?

Maybe your focus should be about the lack of privacy when the midwife spoke to you. What should have happened?

Maybe phrase it as feedback, rather than a complaint. To make the NHS better, not drag down the really pushed people caring for you. And thank your lucky stars you have the NHS - do you KNOW how much childbirth costs elsewhere?

The medicos can't stop you googling - that is your responsibility, and if your responses to what you found were so extreme, maybe tae most doctors' advice: don't think of google as "Doctor."

I don't think the prognosis is horrific. This is what Google told me.

Annoying not preferable but not horrible. Just might need treatment. Or might go away by itself. Whether or not it's there, no guarantees other problems don't exist.

In 1st pregnancy had scans which flagged a non-existent problem (that I cried about initially) so I am sympathetic. What I learnt from that was that scans mostly find non-existent problems.

OP, out if interest is the surgery your baby having next week in any way related to this scan finding?

Medical records are, indeed for the passing of information between professionals. They do not belong to the patient and only in a few specialities do the patients carry them- obstetrics is one case for reasons already outlined.

Congratulations on the safe arrival of your baby. It’s perfectly acceptable to write a succinct email to the Director of Midwifery or PALs but this would preferably be a suggestion for future practice rather than a complaint.

*or better still, a consultant can be made available so necessary scans can be done in the same visit.

Hilarious. Yes, please do suggest this.*

Well I'm assuming that was a poor attempt at sarcasm. Are you usually so patronising and dismissive? While unlikely to happen, this would be optimal patient care and there's no harm in aiming for that by feeding back when situations have been unnecessarily distressing and clearly sub optimal.

While unlikely to happen, this would be optimal patient care and there's no harm in aiming for that by feeding back when situations have been unnecessarily distressing and clearly sub optimal.

If you really think feedback suggesting that consultants should be pulled out of thin air to deal with non-critical follow up then and there you have no idea. Please explain how that’s going to happen? I’m extremely interested. The only way it will happen is by squeezing them to fit in even more when it’s physically impossible. Then you won’t have any because everyone’s jack of it as it stands. Or magicking a whole lot up, but not sure how you would intend to fund them? What are your thoughts on this as you will need to add these solutions to your PALS complaint because god knows the system doesn’t have an answer to this.

The OP was given the impression that her baby may have a catastrophic anomaly and she may have to terminate. I'd hope you would appreciate that this situation would be extremely stressful for her. Getting a same day answer is not absurd, it is good practice. You don't need to magic up thousands of new doctors or exponentially increase someone's workload - the scan was done a few days later, by a consultant.

I have had a significant anomaly picked up on an obstetric ultrasound and was seen the same day, albeit by a senior registrar.

The OP was not given any impression. There was a query made for further investigation. There are a million and one things where a person will write one or more possibilities to be investigated by another who is more appropriate. That’s the use of the ?. It’s not giving anyone any impression unless they choose to take themselves off in that direction. It’s also not making a diagnosis. I have seen some absolutely ridiculous queries and dismissed them instantly. I wouldn’t waste any energy on them unless someone takes it seriously and confirms it or seriously enough to order further investigations.

Getting a same day answer in OP’s case would not be considered critical. Your situation may have been different or you may be in a really lucky situation if you had an excess of consultants that could stand around with capacity for this. If critical there is immediate action but thus would not fall in that bucket and while you seem to have been blessed to have spare hands with immediate capacity it’s not the norm. One may argue it should be but the question remains, how will this be achieved or funded? You seem to think it’s easy but haven’t answered this. How will this be achieved in practice (keeping in mind you won’t achieve an extra cent in funding)?

I myself have a child with disabilities and they were diagnosed prenatally. I had to wait a few days for a consultant to review and diagnose as it was someone with greater expertise in that actual area than another who could have seen me earlier. It was a few days not a few months and even if late termination would have been the best path forward (which would have been the case with two of the possibilities), I could certainly respect the fact that they serviced two hospitals and had a shitload of work. There were no other experts sitting around twiddling their thumbs or that could have fitted me in. I fully understand the lay of the land and didn’t expect the impossible.

Consultants and GPS in my family always say NEVER google.