Let down by the NHS due to covid-19

[Eejay28]

Apologies this is such a long post, please feel free to skip on but I am fuming and really need some advice.

First off I'm not bashing the NHS, I am thankful they are there and they have done amazingly during this crisis. I have family members that work for the NHS and get the strains they have been put under and its been awful but equally I feel as though due to this, we have been swept under the carpet.

From day 1 my little girl has had issue after issue with colic and reflux. She's 14 weeks now and although her colic has gone she still has bad reflux. While I understand reflux is very common in babies, she still has it really badly and due to not being seen by anyone this is a diagnosis I have had to come up with myself and tell the gp that's what I suspect.

Initially she was EBF, then by recommendation of the paediatrician at the hospital we moved to combi feeding and using an anti reflux formula. Eventually she was put on omeprazole as well, alongside the anti reflux formula. We took the hard decision to put her completely on formula as she seemed much happier and content and was bringing less of that back compared to the breast milk. As a result of all these issues after phone call after phone call, she is now on anti reflux formula, 5mg omeprazole, lactulose and extra water with her first and last feeds of the day.

Due to lockdown, in 14 weeks she has only been examined by a health care professional 5 times, and the last time anybody was able to touch her was when she was 6 weeks old in A&E. Even during health visitor visits the main checkup has been via the phone and she has come out to weigh my baby (which involved me undressing baby and placing her on the scales and me pressing the buttons and reading the numbers out whilst health visitor sat 2m away). Baby was also born with a slight hernia around her belly button, which apparently is very common, but because my hv hasn't been able to touch her, she didn't realise she had a hernia and on her last visit she pointed it out and even said "oh I didn't realise she had one of those! “.

So this is all frustrating enough as I've had to make phone call after phone call to my gp to get medication for her especially as the omeprazole regularly causes constipation. One of these phonecalls was because the omeprazole wasn't working and she assumed it was because her weight had gone up, as my health visitor visits have ended now I had to go and weigh baby myself on my unreliable bathroom scales, so gp could work out the dosage!!

What has really upset me though is that I had a paediatrician review on the 24th where they would review the reflux etc and consider the next stages, check her weight and growth etc, and look for intolerances etc. I was really looking forward to going to this appointment as someone would finally be willing to look at my child and give us some answers. But yesterday I had a letter through the post... "Your appointment will now be by phone due to covid-19" . Another f**king phonecall!!! How can a paediatrician check over a baby which has been to A&E twice for throwing up green reflux and taking 4 different types of milk and medication every day over a phonecall?! I appreciate that we need to be careful in the current climate but I also think there needs to be a balance, as I wonder how many babies with issues (a lot which would be much worse than mine) have gone under the radar or had misdiagnoses because of this?

I would really like to make an official complaint to somebody as I feel that we have been let down by the system. But I have no idea about how to do it, as its not one particular person or institution. It's the GPs, hospital and health visiting and although I cannot fault the professionals I have spoken to, I really wish my baby could actually be looked at. I'm starting to worry that something is seriously wrong with her because I've missed it, especially being a first time mum. Has anybody got any advice?

Is she doing better on the medication and different milk? Postnatal care is always patchy, let alone at the moment, sorry you're going through the additional stress of not getting much support. You can make a complaint, people have had all sorts cancelled 'because of covid' so unfortunately I don't think it'll get far, but why not.

My 4 month old had the same issues, however she was started on an amino acid formula straight away after the gaviscon didn’t work. The paeds consultant wanted to exclude CMPA prior to starting omeprazole, turns out it is CMPA and the omeprazole would of masked some of the symptoms.
I discussed everything with my daughters GP, told them what I thought it was, they discussed it with paeds and came up with a plan.
She has been seen in person by her GP once, the health visitor had been out twice to weigh her, multiple discussions with a paeds consultant and weekly contact with a dietitian.
There isn’t anything different that would of been done in my daughters case if they had personally seen her every time.

Sorry, I posted that without finishing!
Have you said any of this to your daughters GP or the health visitor? Asked them directly to see you daughter?

@Mountains91 I have, but I just get explained that due to the situation they are only making phonecalls right now. My hv has been out to weigh her but isn't allowed to touch her. We had an issue where I thought she had oral thrush (still to this day unsure as to whether it was or not), I asked her to look and she said she was unable and asked me to describe. Because she couldn't look at it she suggested I see the gp. The gp just gave me some thrush medication and ended the phone call. 2 weeks later it was there and spoke to another gp, I explained that it was still there, she told me she thought it was probably just a white tongue from her reflux and refused to give me any medication, despite me giving exactly the same description, I asked if she could be looked at but it was a no, and was told to try different things.

@Sandybval she is better with the medication yes, but it is still there.

@Eejay28
That is a shame, our GPs will still see patients in person that need to be seen and I’m pretty sure the health visitor touched my daughter and the scales! Everyone is in full PPE, the same when we ended up in a&e, she was examined by a doctor and the nurses.
There must be a huge variation in what doctors are doing between boards/areas. We are in Scotland, I’m not sure if that makes a difference.
Has the GP suggested she might have CMPA? What milk is she on now?

@Eejay28
I think yabu.
Your child has had medical attention. If there matter was deemed severe, she would have been seen by a professional.
The tendency for mothers to now assert that babies have to have reflux etc rather than accepting this is the normal behaviour is shocking. Especially the fact that parents push for medicines such as omeorazole which have potential longterm side effects.

Yabu.
You haven't stated whether baby is losing weight. If weight was a problem surely like many other parents you'd have bought a set of baby scales, they're not hugely expensive and then you could have properly tracked the weight etc.

Who exactly do you want to complain to? What do you hope to gain apart from pissing and off the very people who have helped you!

@SoloMummy it sounds like you're looking to start an argument. I was purely looking for advice. Im not a health care professional and I am a first time mother, when I see my child is in pain, bringing up the majority of her feeds AND yes has lost weight, I think I am justified in wanting to have someone actually check over her! She has a belly button hernia which luckily we already knew about, but our health visitor only noticed it on her last visit at 8 weeks old, it makes me question if that wasn't noticed until she was a few weeks old, what else has been missed?

Not much advice but just wanted to share.
My ds's hospital appointment has been cancelled. It's an appointment to check a suspicious mole. The dermatologist told us at last check that it was very important it was checked again in 12 weeks (which is next week) as it was changing.
The appointment cancellation arrived yesterday and it stated we may get a call instead.

I'll be ringing the department directly and if no reply I'll be turning up at the doctor's surgery.

Demanding an appointment.

Due to lockdown, in 14 weeks she has only been examined by a health care professional 5 times,

That’s loads. I wouldn’t have expected any more than that. And yes, you have had issues with the reflux, but no one has just left you, people have spoken to you and advised you. You’ve had consultations with a GP, a health visitor, A&E and a consultant paediatrician. You’ve not exactly been thrown to the wolves.

Yes, it’s a scary time. Yes, you’ve never done it before, but I think you are being a bit unreasonable about this one.

I think buying scales is a good idea you can track her weight yourself.

No one has refused to see you and they are doing what they’ve been asked. Physically Seeing a baby with reflux isn’t going to make a difference unless they are obviously unwell and you are worried so a&e will see or kids ward they will then get a full medical assessment and if you’ve not felt that’s been necessary then fair enough, my son also had a belly button hernia and my 9 year old does now, drs aren’t interested he’s absolutely fine in fact I don’t think Hv even knew my eldest had one, it settled itself.

It’s really hard not to become anxious and not know what dr/hv/nurse role is when you first have a baby and then that baby is unwell. And in these times I understand your frustration. The thrush if it’s not causing her not to feed or obvious discomfort should have cleared within 7 days of treatment and more than that isn’t good for them, often babies have white coating in their mouths.
You could ask for a milk thickener or referral to dietician next but no idea how long that will take a wedge for cot also is good so they are sleeping head elevated, you’ll find as she gets older the reflux lessens/stops but obviously that’s not the case for all babies. It’s unlikely you’ll be seen soon, but track symptoms/amount of feeds/vomits so you know when asked next time you speak to someone. And if you’re very worried re WeightLoss/illness a&e or ask for referral to children’s ward hope your baby starts improving soon

Sorry to hear your DD's been so unwell with reflux and you feel let down.
The coronavirus situation can't be helping at all but I don't think that's the only reason. Support from HVs, GPs and other healthcare professionals can be pretty patchy when it comes to things like reflux and CMPA. We had a battle with DS and it was way before coronavirus, although to be fair his symptoms were less severe than your DD's.
I urge you to consider the possibility of CMPA, from reading your posts it seems likely, and it's important to rule it out. For a formula-fed baby that means giving a hypoallergenic formula for 2-3 weeks to see if symptoms improve.
www.allergyuk.org/information-and-advice/conditions-and-symptoms/469-cows-milk-allergy

If the reflux is caused/worsened by CMPA then it obviously makes sense to cut out cows milk which then reduces the need for so much medication.

My DD was the same as a baby and eventually was prescribed lactose free formula.

They really didn't want to prescribe it as it's expensive but I insisted.

Good luck

It won't have been lactose free, it will have been free of cow's milk protein - there's a difference.

All milk has lactose in it, apart from special lactose-free milk obviously, but that will still have cows milk protein in it, which is the bit babies react to.

It's very rare for a baby to have lactose intolerance as opposed to CMPA.

Well it's called LF lactose free SMA, that's all I know!

@Eejay28
You've been given lots of positive suggestions. If so concerned about weight, why haven't you been proactive and have to bought scales?

Perhaps look into talking therapists for yourself, as you obviously have things that could do with discussing. Most babies, even when with conditions, have not averaged seeing a medical professional less than every 3 weeks! I say that as a ftm of a baby who had amongst issues a liver problem and deafness.

"Well it's called LF lactose free SMA, that's all I know!"

OK fair enough, sorry!
I was a bit quick to get on my lactose v cow's milk protein soapbox But there is a lot of confusion about it. And now I'm confused about why there is a lactose free formula

@SoloMummy Yes I have been given lots of positive suggestions and I thank those people for that. However if you have nothing constructive or nice to say then please stop trolling my thread. I am not entering the argument you are currently looking for. Thank you and goodnight.

I dunno @NameChange30 but it worked miracles!

Thank you for your suggestions, GP hasn't suggested CMPA to me however it will definitely be something that I will be speaking to them about. I do not like her being on the medication as it binds her up too but equally it is the only thing that is currently stopping her from bringing up at least half of her feeds every single time. To see her in distress after every feed is so upsetting and yes I appreciate that reflux isn't a serious issue, especially in the eyes of NHS, however as most of you have suggested I'm concerned CMPA or something else could have been missed.

My point in this thread was for the advice you have given me but also to find out a way to raise a concern for not just my child but for other clinics and other important appointments that have been cancelled. My child was merely just an example of how I feel we have been let down during covid. Clearly some people have missed my point in this, maybe my original post wasnt explained properly as it was done through the frustration of yet another cancelled appointment.

So thank you to those that have taken the time to make helpful and constructive suggestions.

Just to warn you, your GP might not know much about CMPA, so you need to do your research (check out the link I shared and the Nice guidelines about suspected CMPA) before you talk to GP.

@NameChange30 thank you, I will do.

I agree that CMPA is worth looking into as PP said GP knowledge can be patchy so do some research yourself. It's a difficult time to have a poorly baby and certainly adds to the stress.

I think there are things that will have been missed in babies, children and adults during this crisis so share your concern about that. From what I've read it varies by area but my baby is 24 weeks old and has several issues that have needed attention, he has had quite a few phone appointments but has also been seen at an outpatients clinic, been admitted to a ward, had various scans and been seen by the health visitor. Care is still available but telephone appointments are being done where possible.

I can't help with the reflux but my DS had an umbilical hernia. It looked huge!
He's now nearly a year and it had disappeared completely at 6 months. There is nothing they can or will do for it at the moment anyway it's a case of watching and waiting.