To make a complaint re: health visitor/hospital

[Chops2016]

I have been mulling this over for a couple of weeks now and I am unsure whether I should make a complaint.

My DS (only child) is 9 months old now. He is a very happy and healthy boy, however the first few months of his life were traumatic and he was quite ill. I wanted to breast feed him so went ahead with that. I struggled to get to grips with it but figured that was because I was a new mum and I had never done anything like this before. I spent many a night phoning breastfeeding support lines when DS seemed to be inconsolable and wouldn't settle to feed. I asked for advice from the HV and followed everything she recommended. I took DS to be weighed every 2 weeks and his weight was slowly going down. I voiced my concern to the HV and she just told me to express more to increase my milk supply, which I did. At this point I either had DS or a pump attached to me 80% of the day. DS continued to lose weight.

This continued, and I continued to flag up my concerns. I got the same advice from HV - always saying its my milk supply - pump more. DS was about 8 weeks old at this point. I took my him to the GP and he commented that yes he looks very thin and referred me to a paediatrician - the earliest appointment was in 3 months! At this point I was tearing my hair out with worry, I could see DS's ribs when I changed him and he had loose skin on his arms. I ended up taking him to A&E. They weighed him and he had fallen into the 0.4th centile. They did blood tests and found he had abnormal liver markers. He stayed in hospital and I started giving him formula top ups on top of BF at the doctor's suggestion. Ultimately I ended up just switching to formula and he improved dramatically. None of the doctors could tell me why he had been losing weight or what was wrong with him. Upon admission I asked the doctor that first saw him to check for tongue tie (as a friend had suggested perhaps it wasn't my milk supply), she gave a cursory glance at his mouth and said no, he doesn't have tongue tie. The next few weeks we were in and out of hospital constantly for blood tests, scans and appointments with various health professionals.

Over the next few weeks DS continued to put on weight and get better. He was on formula and thrived. His liver function slowly improved and eventually normalised and we put it all behind us. Until a couple of weeks ago.

I took DS to be weighed and I mentioned to the HV that his tongue seemed an odd shape at the tip, was that normal? It is like an inverted heart shape with a little notch at the end (I think it looks very cute). She has a look and just breezily comes out with "oh yes, he has tongue tie". I just didn't know what to say - all the blood tests, hospital stays and worry we had gone through! I couldn't believe it.

So to my question; I am in two minds whether to complain about what my son had to go through in his first few months of life, all because nobody thought to check for tongue tie, and the one health professional I specifically asked to check for it missed it. I don't expect compensation or anything daft like that, but I really don't want anybody else's baby (or any parent!) to have to go through what we did. I want to raise awareness for health visitors and health professionals to check for tongue tie as soon as a BF baby starts losing weight. Not only was this awful for DS (he must have been so so hungry, and I feel utterly ashamed and guilty for that), but I lost count of how many blood tests, scans and appointments with consultants he had which will have been an unnecessary strain on the NHS.

If I do complain, who do I complain to? The HV? The hospital? Both? Are HV employed by the NHS?

I thought I was being the best mum I could be by following the advice the HV gave me (and feel like a total idiot for that now). In hindsight I should have just put him on formula as soon as his weight started getting low, but like a fool I persevered with BF as I was advised.

I'm a bit worried about this thread getting derailed into judgement of me not just putting him on formula earlier (or BF Vs. formula), please don't post if that is all you have to say, trust me you can't beat me up any more than I have myself about that.

Fully agree with Starkinthesouth.

My DH is a dentist and trained tongue tie practitioner. This is a big problem with HCPs. He trained post the birth of our 3 and 4 year olds as we had such terrible advice about TT. He diagnosed and separated our 1 year olds a 10 days. Totally different story

He sees a huge number of parents who have often been told by totally unqualified HCPs that their baby does not have a TT but without that same HCPS advising that, actually, they have no training in this area at all

Properly diagnosing a TT is not something that is covered in general training for doctors (either GPS or paeds), midwives/nurses/breast feeding counsellors etc. It is a specialist skill requiring specialist training. If someone starts giving advice, as them an what university they carried out their training and whether they are a member of the Association of Tongue Tie practitioners. If they are, they will be on the online register. If not, treat their advice with caution and disregard any formal "diagnosis"

Just to add a positive story about how it CAN be.
I had a straight forward birth and good recovery. Ds took well to the breast after a couple of syringe feeds in the first few hours. He fed well on colostrum till my milk cane in majorly on day three and he could no longer latch. I expressed off till the boob got soft and he could latch a bit but still not right.
I went to my local NHS bf drop in where a qualified specialist bf midwife immediately spotted the tt, referred me for a snip and gave me a breastfeed/pumping/bottling plan to get us through the week. TT snipped and no more bottles required. No formula needed either (though I'd have no problems if I did but by pumping my supply matched his apetite).
13months of bf followed.

It can be sorted quickly and easily if people have the right knowledge.

You poor thing. And poor ds. What an ideal, definitely complain.

I diagnosed DS1 with tongue tie (no medical training but I can use google images). I asked a couple of midwives/doctors at the hospital before discharge and none of them identified a problem. Went to see the local health board breastfeeding specialist at her clinic and she referred us to the next areas ENT surgeons for a separation. That happened at about 2 weeks. It didn't fix all our bf problems but I managed to mix feed DS1 to 10m.

Now a week in with baby 2. Again it's me that's pointing out the tt. I want it separated. Midwives don't seem to know how we get that done.

I accept this might be a lost skill, but for my babies one look in their mouths and it's bloody obvious.

I would complain, I remember finally getting the guts to tell the about PND, I really wasn't enjoying the baby stages at all, whilst everyone was cooing over how marvellous it was. There was a cover HV, the message never was acted on.

I complained when I was better, because it takes a lot of courage, it was thoroughly dismissed. I did say my feelings that if I didn't have the support I did externally I would have been driven crazy.

I would work at it from an angel that all BF babies get checked for tongue tie. That way it's something they actively do once of twice and can be dealt with promptly.

I'm sorry this ruined your experiences, I know how hard it can be when you're expecting for a certain out come and it doesn't happen.

It can be easy enough to diagnose an anterior tongue tie. It is much harder to diagnose a posterior tongue tie. Plus many NHS practitioners and quite a lot of private practitioners will not separate a posterior TT.

I have emailed a complaint to PALS, so we will see what happens!

Thanks again for all the support and kind words

I complained about my HV, I think to the Nursing Council and somewhere else.

They investigated and found she had a huge list of failures, the outcome was basically that she has to write an essay on why she was shit, like a naughty teenager.

A hell of a lot of the professionals don't have any idea when it comes to tongue tie. You should complain but u do think it's a training issue. So many babies have struggled with feeding and it was down to tongue tie many people ended up paying private

If I do complain, who do I complain to? The HV? The hospital? Both? Are HV employed by the NHS?
The 'NHS' doesn't really exist. It is an umbrella term for a load of different and legally separate organisations. You would have to find out exactly who the employer of the individual member of staff is you want to complain about. Or complain to the CCG, who are the people that 'commission' the services (i.e. decide which organisations provide which services and pay them for it).

I feel like every midwife, HV, gp, and even paeds doctor needs to be told repeatedly and firmly that they know NOTHING about breastfeeding. The bad advice I got from people who had probably had three hours training (just enough to be dangerous) could fill a book!

DO NOT feel guilty- we all trust health professionals and although they too are mere humans we would expect them all to know a hell of a lot more than we would first time (or second time!) round. Please do complain to any of the services that have not served you correctly- I do believe that (hopefully) they can learn from their mistakes- it may also aleviate some of your guilt as you will realise it is not your fault at all. I am so sorry for the way you feel but please, please realise you were doing everything that was told of you and you couldn't have done any more. It is horrible to look back years later and realise you have been fobbed off as a first time mother but it happens a lot.

Sorry I didn't make my point which was that they should all be able to refer to Lactation consultants

Definately complain.

I EBF my DS for 6 months and during that time his weight plummeted from the 50th percentile at birth to the 7th by the time he was about 10 weeks old. Feeding was a horrendous experience - he would scream hysterically before and during a feed, and as he got older and more aware, just the sight of my breast being offered sent him screaming. It was honestly one of the most awful, stressful and worrying times in my life.

I sought help repeatedly from the community midwives, SureStart breastfeeding counsellers, nursery nurses who weighed him every few weeks and all they could say about his weight dropping was to see my GP, my GP who referred me to hospital to see a b/f midwife - and no one identified that he had tongue tie.

The TT (which is obvious now we know what it looks like) has now been diagnosed by a Speech & Language Therapist who we have referred to because his speech is delayed. According to the SLT the type of TT he has can prevent him making 4 different sounds in speech. As DS is now 2 they are reluctant to snip it as they want to see how he progresses with therapy first, but if there is no significant progress then we will do whatever it takes to get it snipped.

TT is not just about feeding issues, it can affect speech later on so its critical that it is identified and treated (if appropriate) while babies are young.

Well done for complaining OP. IME, most HV and MW I work with are not fit for purpose. I'm not surprised that women are treated like they are "nuts" because they are worried about their babies. We are expected not to make a fuss. Just like the lack of pain relief in labour and medics not believing you are suffering - it's shocking how women are ignored.

I would complain that they didn't check for tongue tie. Had they have noticed tongue tie immediately and snipped it that day you may have found he gained weight from breastfeeding.

I was advised by an infant feeding specialist that undiagnosed tongue tie can cause speech problems later on, plus dental health issues. It is luck as to whether a hcp picks up on tongue tie, which is odd when it's often noticeable when pointed out by someone in the know.

Yes do complain. I had problems breastfeeding + in hospital a nurse sat with me for about 40 minutes trying to get my son to latch + it wasn't happening. Her boss came looking for her for something + the nurse panicked, I assume she thought she was getting into trouble for the amount of time spent with me. She then said to me quite nastily "that's your fault your not holding him correctly" + buggered off. My son was only 3 days old + I had just an emergency section. I was devastated + felt like a complete failure as a new mother. I sobbed for about an hour.

When I got home I had a health visitor out + she asked me to try it. She told me within 2 mins that it wasn't going to happen as I had flat nipples + she looked at my son + told me he had a tongue tie.

So angry at the fucking nurse in the hospital for not noticing any of this as she was responsible for promoting breast feeding!