"Lack of tongue tie knowledge"

About: Norfolk Community Health and Care NHS Trust The Great Western Hospital / Maternity

(as a parent/guardian),

Last July I gave birth to my daughter, after a very long and stressful labour that ended in a C section. We then had some problems getting her latched on to feed properly. I had a lovely midwife who was very helpful, then the shift changed, my daughter wouldn't latch at all and the next midwife decided she would need a formula feeding without even watching us attempt to feed. Being an exhausted first time mum I did as she said. The night midwife came back on and got us back on track although latching was still very hard.

From this point things only got worse. I went home and the pain began. I asked my midwife, then my health visitor, I went to group after group. Everyone said her latch looked fine and they left me to it. Breastfeeding was so painfull for the first 6 weeks that I would bite on a sock while I fed my daughter. My partner would come home from work to a screaming baby and me crying that I couldn't feed her anymore. The pain eventually decreased at 8 weeks and was more manageable.

My daughter fed every 20 minutes all day and every couple of hours at night until she was 13 weeks old, when it mercifully extended to every 45 minutes. I would feed her, put her in the car, drive to the shops. and by the time we arrived I would need to feed her again. My house was in chaos and there was nothing I could do but sit on the sofa and feed my daughter.

We moved areas to Norfolk when she was around 3 months old. My new health visitor said she didn't think I should be breastfeeding as it looked like trouble, which was hardly what I needed to hear.

Not one of these health professionals thought my daughters constant feeding was cause for concern. A friend mentioned tongue tie as a possible cause for her issues, so I rang my health visitor to find out more. They palmed me off on my GP, who said as she had got to 5 months with no weight issues they wouldnt treat it. So I paid for a private evaluation of my daughters feeding, we said a lactation consultant who is also the infant feeding coordinator of the local hospital. She has been a godsend. She refered us to a brilliant surgeon and he fixed my daughters tie.

So now I have a baby that has gone from constantly feeding, with obviously painful hiccups, wind, never ending drool, sucking blisters on her lips, frequently green stools, I would have to use the flipple technique for every latch and even then she would pop off and/or I would have to adjust her latch 2/4 times in any 5-10 minute feed.

Well now she latches effortlessly, she only drools when teething, rarely hiccups and has lovely bright yellow/orange baby poo. The blisters are gone and she feeds every 2-3 hours day and night. It has changed our lives and I'm finally able to enjoy my daughter. No thanks to the NHS.

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Response from Zita Hipperson, Patient Experience Project Support Officer, Norfolk Community Health and Care NHS Trust

Thank you for your comment. We are sorry to learn of your experience. In order for us to investigate this further it would be helpful if you could contact our Patient Advice and Liaison Service (PALS) either by telephone 0800 088 4449 or email pals@nchc.nhs.uk with more details.

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Update posted by Unhappymummy8991 (a parent/guardian)

Given that your pals department referred me here, I am somewhat unimpressed with that response.

Response from Paul Cracknell, Director of Strategy and Transformation, Norfolk Community Health and Care NHS Trust

Dear unhappymummy8991

Can I first of all apologise for your experience at a time when you were understandably and rightly expecting better support and clarity than you received. I am pleased that your daughter is now feeding better and I'm glad for you as a family that the new routine has given you a greater sense of space and freedom to enjoy your new daughter.

I did read your reply yesterday and spoke to our Pals team about it. I know that it has already been passed on to one of our senior managers responsible for Health Visitors to look into and ensure learning is shared across our wider Health Visiting Team. Can I apologise to if you feel fobbed off by the reply above inviting you to get intouch with the Pals team. I'm sure the purpose is simply to confirm how you would like to take it forward.

Please do get in touch with our Pals team or you are welcome to contact me.

Paul Cracknell, Director of Strategy and Transformation, Norfolk Community Health and Care

paul.cracknell (at) nchc.nhs.uk


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Response from Maria Richardson, Head of North Locality, NCH&C We have made a change

Dear unhappymummy8991

As the Head of Health Visiting in Norfolk I am disappointed to hear about your experience during and following your pregnancy and the subsequent lack of support you received as a new mummy. I would also like to offer my apologies and I am glad to hear that your daughter is now feeding well and I hope that life is going well for you.

I have discussed your situation with our Infant Feeding Lead as I was very concerned with the response you received from the Health Visitor. She informs me that there have been many issues with Health Visitors under or over diagnosing tongue tie and there is now a referral pathway and a training for Health Visitors. As a result of your experience we have now escalated a training programme for all Health Visitors beginning in April 2015.

I would also like to offer you a home visit from myself and our Infant Feeding lead to discuss how we may be able to better support parents in a similatr situation, If you would like to take up this offer please call me on: 07919534573.

Best wishes

Maria Richardson

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Response from The Great Western Hospital

Thank you for your message. We are sorry to hear of your experience and that we did not meet your expectations. We are very keen to learn from our patients’ feedback so we can continuously improve our services. We would welcome you contacting our Patient Advice and Liaison Service (PALS) so we can look into your concerns by emailing pals.team@gwh.nhs.uk or calling 01793 604031. In the meantime we have passed on your comments to our senior nursing and midwifery leads to log your concerns and identify any lessons that can be learnt.

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