"Very poor assistance"

About: University Hospital Lewisham

I have been to the A&E this week end because my baby has been trouble feeding for the last 4 weeks crying and refusing to feed when I was offering the bottle. She is 4 months and 2 weeks. Last week things got worse when she refused almost every bottle. This week end she hardly drunk 300ml on Saturday and 100ml on Sunday. That's when we got very worried and went to the A&E. First I have to say I have seen GPs and health visitors none of them taking the problem seriously. When we arrived to the A&E they took her weight - she has lost a bit this week, temperature and several urine samples. We were told temperature was fine and that she had no infections. However because she had been on poor feeding they decided to keep her overnight and put her on tube feeding to see how she goes. We have been sent to the Paediatrics department. After a night tube feeding (she refused to take any bottle that night), the doctors decided to take the tube out and see how she goes with the bottle only. She hardly took 370ml in 24 hours whereas a baby of 4 months old should be taken between 600 and 800ml depending on her weight. I don't invent anything it is from the NHS guidelines. Anyway in the meantime no further investigation was done, no blood tests, no Ph gastric acidity was done (in case the cause would be severe reflux, no scan (in case she might have a malformation somewhere), no further urine samples and they did not weight her two days later when we went back home. She was still crying when feeding and doctors told us she has reflux although she is not vomiting. She has been indeed diagnosed with reflux over two months ago and treated for that with medication during a month. Things got a bit better but went back to the same situation a couple of weeks ago. The following morning she took three bottles in an okay way. still crying but she took it. Based on these three bottles, doctors decided then to discharge us! We shouted saying she was still struggling to feed, crying ect but none of them would listen to us. Each time I was speaking with a doctor he would send then another one to avoid talking to me. They claimed they helped because they gave medication for reflux. I am convinced she has something else but no one would listen to what I had to say. One of them even stopped me while I was speaking taking no care of me. Best part is while we were leaving we received a call from our GP saying the urine sample shows signs of infection!! I am extremely angry. Several points I have to make about this experience: - No follow up. We saw 5 doctors in one day... not really helpful to have a clear view on what's going on - No willingness to investigate further with no tests made that we are aware of. - No professional assistance: no willingness to listen to the parents - Constant change of decision: put the feeding tube then take it out... reflux/no reflux

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Responses

Response from University Hospital Lewisham

I am truly very sorry to hear that your visit to University Hospital Lewisham Children's Emergency Department was below the level of care you would hope to receive. This is not typical of our department. I am extremely sorry that you felt that the medical staff did not take the time to listen to your concerns, on more than one occasion. This is against our values of excellent communication and compassionate care and we will endeavour to ensure that this does not happen again. We are very grateful for feedback, especially when parents are not happy with our service. It gives us the opportunity to review, with staff, the principles of care that we provide, to ensure they are consistent with a caring and compassionate nature and to encourage good communication by our staff. If you would like your concerns to be looked into please contact our PALS (Patient Advice & Liaison Service) team who will be able to talk to you about the issues you have raised and advise how these can be taken forward. The PALS team can be contacted on 0208 337 3355. Robert cole, Matron Children's Services University Hospital Lewisham

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