My name is Lily-Sue, but my mummy calls me Munchkin (or 'Munch' for short!) I am 8 years old, and this is where my mummy will help me write all about all the fun things we do together. I hope you enjoy reading about the adventures of my mummy and me, Munchkin, with the occasional appearance from the siblings - Beastie and Plumlet.

Wednesday, 30 April 2014

The day the NHS listened to me!

Getting things wrong, and putting things right!

A few weeks ago, I had a few harsh words to say about the NHS. To summarise, we had been left feeling very let down by our country's National Health Service following the birth of Baby Plum back in December 2013. He had been born with a prominent case of tongue tie that had not been detected by any of the health professionals put in place to care for us during Plum's first couple of days in the world. Even with the struggles I was having trying to help him to breast feed, not one trained medic thought to inspect the state of his tongue and just put it down to him being a 'difficult baby'. 

"He'll get used to it when he's hungry enough ..."

This was the answer I was given every time. 

Once we were discharged from hospital and the tongue tie was discovered by a midwife on a home visit, we were then let down by a 'lost referral'. Whether this referral was never actually made or it was lost somewhere in the system, I do not know, but this caused our ordeal to be stretched out even longer. 

Once the referral was made (again) and we finally received an appointment for his tongue to be released, we were then let down by the hospital when the doctor refused to carry out the procedure due to us not having a bottle with us and claimed all medical regulations would be broken if he cut Plum's tongue tie without having a bottle of milk present.

On being turned away, disappointed, frustrated and in tears, I was forced to wait for another appointment. We were then let down by the fact that we had to wait nearly 2 weeks for another appointment to be issued to us which was for another 2 week in the future.

That is a whole lot of let downs from a professional body that is in place to help and support your health and well-being!!

However, there have been developments. After being discharged from the maternity unit following Plum's birth (Hospital A) all of our dealings concerning the tongue tie referral and appointments were with another hospital (Hospital B) Following my first post (a link to this is at the beginning of this post), I contacted the PALS office for Hospital A and went through my story with them. They offered to help by logging my complaints and by chasing up the rebooking for me. A few days after receiving our rebooked appointment date from Hospital B, I answered a phone call from Hospital A. Someone there had picked up our complaint and taken notice. Someone had looked at it and recognised the unfair treatment we were being dealt by Hospital B. This person really did make a difference. That Friday afternoon, a voice on the other end of the phone said to me ...

"Bring yourselves in to *Hospital A* on Monday morning and we'll carry out the procedure for you"

And this is what we did. 
Appointment time: 10.50am
Back in Waiting Area post procedure: 10.52am

And do you know the crazy thing ...?

Yeah, thanks Hospital B!

In fact, when I asked the doctor at Hospital A if I should make Charlie's bottle up before he performed the operation, and then started to relay to him the 'regulations' we were turned away from Hospital B for, he actually looked at me as if I were crazy! He had never heard of any such regulations and said I was free to feed Plum outside the Treatment Room afterwards, but it was not at all an essential part of the procedure or indeed the measurement of success.

I felt a bit silly and quite embarrassed. Not because of the doctor's reaction, but because I had walked away from Hospital B having allowed that doctor to lie to us completely! I felt ashamed that I had let that happen and I felt guilty for Plum as the extra few weeks of discomfort he had endured had not been necessary.

Back to PALS it was. I wanted first of all to thank them for helping to push the referral through for me. If it hadn't been for them, my case would never had been picked up by the relevant staff at Hospital A. The PALS team were caring, understanding and sympathetic, and more importantly than all of that, I trusted them. I trusted they would do what they were promising to do for me, and I was right to trust them! They also assisted me in carrying my grievances with Hospital B further.

Then they had a small request for me, and this takes me to today's events!

This morning, Wednesday, 30th April, 2014, Plum and I were invited in to Hospital A to attend their monthly Board Meeting. They had asked to hear our story in person! Not doctors, midwives or administrative staff ... but the hospital's Board of Directors. These are the people who can really make a difference. Today was my chance to talk to someone who would actually listen with the power to act on our experiences.

In the few weeks leading up to the meeting, I went through a whole mix of emotions. First of all, I was shocked that they wanted to listen to me. These are the people you never see, the people who are busy in the background, making things happen! I then felt privileged that they deemed our ordeal worthy of a place in their important meeting, which probably had a very full agenda already. I was proud that I had managed to put my issues across in a way that actually prompted people to take notice. I was extremely nervous at the thought of speaking in front of a dozen important and very influential figures within the hospital, like, really nervous! I mean, I'm a reasonably reserved individual, not used to asserting myself in public places, yet here I was, about to put it all out there. I was about to reveal all to a group of people who make all the decisions, apply all the plans and make all the rules!  Ultimately, however, I was very excited. I felt really positive at the thought that this meeting could change all sorts! Because of this talk, another family could be prevented from enduring the struggle that we, and so many other families did!

The meeting went really well. The Board listened to the good, they listened to the bad and they even listened to the ugly! I told them everything! From the amazing midwifery staff that cared for me when I gave birth to each one of my beautiful babies, to the not so good midwifery staff who failed to care for us when they needed to. From the wonderfully caring Paediatric staff who examined each of my children for any underlying conditions before sending us home, to the one Paediatrician who cared a little less and let us down, let the Trust down and let herself down. From the amazingly supportive PALS team at Hospital A who assisted me through this whole ordeal and were the machine behind our attendance at the Board Meeting, to the disappointingly disinterested administrative staff at Hospital B who couldn't care less that we had been turned away from having the procedure the first time around. From the warm, friendly, informative medical staff who carried out Plum's procedure at Hospital B, to the dismissive, dishonest medical staff who refused to carry out Plum's procedure at Hospital B.

And most of all, how Hospital A got it wrong ... Hospital B got it more wrong ... Hospital A admit their error and put everything right!

Ok, so I may have lost out now on my final chance to breast feed, but at least Plum is now slowly adjusting to a more natural, comfortable way of feeding and is a much happier baby boy as a result!

I want to finish up by saying a huge thank you to everyone who played their part in putting this right for us. You all know who you are ...!


  1. Well done you for standing your ground. Shocking that you were treated this way but I hope by you opening up and talking honestly about all of this that it saves others from going through the same ordeal x

  2. Well done for fighting your corner hunny. For standing up and making a difference for other families.

    So proud of you xx