DH wants to complain to hospital

[MusicalTrifleMonkey]

I don’t know what I think, so voting will be about him:
YABU - he’s wrong to complain
YANBU - he’s right to complain

Some of you might remember my thread the other day about being a crap mum. We recently found out my 13 week old has a very obvious 90% tongue tie. It’s been causing all sorts of issues since he was born, from very painful gas, to acid reflux, vomiting, lack of sleep, struggling to eat and a slow on growth.

3 people checked his tongue tie ( 2 midwives and my HV) and I saw 2 doctors who didn’t check it and dismissed my issues. Twice I tried to contact the infant feeding team to ask for help as I was having problems with him and twice they didn’t get back to me (I received a text but they didn’t follow up). They are the ones who would have done the division if discovered under 12 weeks old.

We had to pay for a lactation consultant who spotted it and now have to drive him 2.5 hours to the next county to get the division done privately and then back again.

Today I have spent all day just trying to feed him. He’s hungry and he’s tired and he is struggling to eat. I also think this has massively given me confidence issues and not helped with how I’ve been feeling, which is very down and like a terrible mum.

DH wants to put in a complaint. When the team at the hospital checked they did a brief look in the mouth, just visual they didn’t use hands, declared he was fine and moved on. DH doesn’t want money, nor does he want anyone fired but he thinks it should be flagged so that they are more thorough in future to avoid anyone else having to go through this.

I’m not sure what I think. I’m upset about everything but mistakes happen and the hospital are busy with lots of babies and it’s Covid.

What would you do? Would you say something or just leave it?

Please don’t pile on, DH is upset at seeing his son in pain and discomfort and I am very down and exhausted.

I would complain just so it’s flagged.

In your position I would getting a letter from the person doing the division and use that to back up your complaint. Complaints need to be made so they can learn from their mistakes.

A complaint should be made otherwise they will do the same to other patients, who might have even worse outcomes than you.

They failed your family. Keeping silent protects them. I don't know why you would want to cover up for their negligence?

If you complain then you may save another baby from the issues, pain, discomfort and hunger that yours has been through. Not to mention the distress, worry and feelings of hopelessness of other potential mothers. They need to be more thorough and should be aware of mistakes they have made.

I am a nurse and am seeing the nhs on it's knees currently. But I absolutely agree with your husband that this should be raised and if a complaint is the only way this can be done so this problem is addressed within the relevant department(s), then so be it.

I think you have grounds for complaint.

Good luck with getting it sorted, I hope things become easier for you soon.

The reason PALS exists is to deal with stuff like this. Don't feel guilty. Your DH is right that it will help them review their processes.

I hope the procedure goes OK and you start to have an easier time.

Perhaps if you think about it as raising a concern, rather than as a complaint? That way, you’ll be better able to put yourself in the right frame of mind to support your DH when he’s writing what you both want to say.
I agree, this does need to be raised, as they probably need either further training, or different procedures, but if it is the ‘complaint’ aspect that is bothering you, focusing on wanting protect other from going through the same thing will settle you. Contact PALS at your hospital.
Good luck, and all the best to your new son.

Complain, definitely. If they don't get feedback they won't know they have failed your child and will keep on doing it.
A complaint doesn't have to be rude, it can be presented as a learning opportunity whilst outlining why you are dissatisfied.

There are a couple of threads about the need for assertiveness, things like this highlight why it is needed.

If you'd paid to see two lactation consultants, and the first one missed the tongue tie, you would (hopefully) not hesitate to complain to the first one, because you'd paid directly rather than indirectly.

I'd do it if it is constructive: our family was failed through XYZ, please increase training and awareness relating to tongue ties (or whatever you want them to change).
DS1's tie was missed until we saw a bf consultant. The Dr (Professor?) who divided it asked if we would mind a colleague seeing it before it was divided as it was atypical - and hence probably missed by the NHS.
Just a heads up - tongue tie is genetic, so any future babies have a greater change of a tie. DS2's was identified at birth because I explicitly asked.

I would, wish I had done it for DS but his lip tie wasn't nearly as bad as yours seems to have been.

It may help the next mother to not have to go through what you have.

I would complain so it's flagged as an issue that they need to improve on.

get/request copy of db/your notes from hospital
get report from your private clinician & bill/invoice of cost
when doing letter I suggest you first do bullet points of sequence of what has happened & what the effect was on db & what should have happened (NICE guidelines? check!)
First line should start with the fact that while you understand this is a difficult time because of covid nonetheless this should have been noted & some follow up plans recorded
Than follow with sequence of events, dates & times & who was involved & what was said (which is why you need notes)
At the you need to mention (noting copy of your private clinicians notes is attached)
send by email & snail mail (special delivery so its signed for)
Never send original letters - send copies or scan
It takes time & it will be even longer than normal but there is a time frame for them to respond.
hard though it is you have to be cool & objective
if something was missed it must be reviewed & changed for others

Tongue tie causes so many problems for babies and mothers and so hard emotionally. I would raise it as I think you will regret not doing so later. It will help someone else and you wouldn't want anyone to have to go through that. Many parents cant pay for a private consultation
.
Interesting a pp mentioned it being genetic. I'm convinced ds1 had tongue tie but it was never mentioned /checked for. Still has.a bit of a lisp at 8. Dd4 had tongue tie which was snipped but mostly due to moving area and support being better. I would rather have the support I had with dd4 than the problems with ds1

I read most of the 'Should I complain about the NHS' threads and roll my eyes because they're often nonsense, someone's feelings hurt or an unavoidable covid delay.

But you absolutely need to complain here. Someone made a mistake which has had lasting effects on you and your family. Actually, more than 1 person. There are a lot of failings here and they need to see what they did wrong to improve for the next family.

Wishing you guys all the best.

(I had to do a complaint about something completely different - adult - & very serious & i got advice from Charity who supports people in complaints procedure - there are probably some differences in adult & child & new born complaint procedures.)
I seem to remember vaguely that there is something either in the offing or starting soon about certain recompenses for costs of things like this?

Complain. If your boy continues to struggle to gain weight you will be glad of the fact you have that on file rather than 'no tounge tie' checked on numerous occasions.

Complain 100%. It's not going to cripple the NHS, its not going to get anyone fired, its not going to make you a penny. But it will hopefully end up in extra training where its clearly needed!

It may ease your emotional stress as well.

Good luck for the tounge tie cut!

Does it have to be a complaint? If 3 people checked and missed it, it sounds like it’s either a minor or unusual one and that may have contributed to why it was missed.

If you feel you have to raise it, I’d couch it in terms of raising awareness and back it up with evidence from your private lactation consultant about what the actual issue was so they can learn from it.

You had 3 nhs professionals saying it is not an issue but going on what a lactation consultant said? Have you seen the private consultant yet?

Either you have 3 incompetent NHS professionals in which case it certainly needs addressing and a complaint is definitely justify or the lactation consultant is the one giving wrong medical advice.

Your son has had 13 weeks of struggling to learn how to nurse properly.
At least 3 health professionals have failed him in that time.
Yes, your husband is doing a fantastic job advocating for his family.

My boys both had tongue ties. Both had feeding issues and had tongue tie divisions done privately. The first son has the same missed diagnosis. But I think the problem is actually that there is very little service provision in the NHS and the feeling is that only anterior tongue ties ( not milder ones) need treating. I suspect one of the reasons midwives/HVs don’t report them is that treatment is so limited and disregarded in the NHS. In my area there was a 12 week wait and the feeding issues had often resolved.
I got a diagnosis from a private lactation consultant. I think it is reasonable to write and make that point that service provision in your area is a problem .

I'd get in touch with pals to log it as potentially a training issue. Has it been missed because they can't actually touch and have a good scout around ?

I would have thought they would have looked again for tongue tie with your struggles with feeding.

It is easy missed and they were missed with both my 2.

1st time it was picked up after a day or two and snipped. Although subsequent feeding problems were also overlooked to a certain extent because latch was great. One dose of mastitis later I had enough of feeding - and tongue tie was done again. Sometimes its just seeing the right people.

2nd time was missed again. But because of issues previously they sent us to get checked by BF specialist & lo & behold a bad tongue tie far back.

I do think they should have spotted it in your case and I don't think it is unreasonable to make a complaint to PALS - if for further training more than anything else.

We did complain to PALS about a separate matter when our DD had a misdiagnosed injury. And we were happy with the process and the outcome (meeting with consultant).

Yes, complain! It's so common. My son's tongue was 95% tied, I spotted it immediately, but it wasn't until my very helpful health visitor chased it that we received help. I've several friends that experienced similar, but paid for private help.

Definitely do it. I had to raise a complaint about a day surgery, the post op staff were shit. When they investigated, they realised that they hadn't given me the anti emetic, so it was there fault I spewed ever where and the whole day unit staff had to undergo more training on other issues. They shouldn't have discharged me.
Hopefully no one will be treated like I was.
I get that it's difficult now but it's can only improve if people speak up.