"I am majorly disappointed"

About: Royal Manchester Children's Hospital / Paediatrics

(as a parent/guardian),

I am under central hospital as my baby girl now 11 months has laryngomalacia and subsequently has bad reflux. I have been very disappointed with my follow up since she was discharged from this hospital. The first appointment the clinic was running very late, over 2 hours after our appointment. This is unacceptable with a small baby who needs changing/feeding regularly. Yesterday my latest follow up appointment was in Clinic 5 with a lady doctor (only running 40 mins late today! ). This appointment should have happened at 9 months, but failed to come through, so I had to chase to only be offered an appointment at 11 months. This meant that from 6 months to 11 months I had no support.

So I had to deal with the following problems on my own. When my baby started to be weaned, we had lots of problem with choking on food, a few scary episodes that involved vigorous back thumping. Night times are horrendous, we are still up every 1-3 hours in the night feeding constantly, she can not sleep unless upright in her pram, so never in a cot. The left side of her chest rattles 50% of the time (sounds like she has a chest infection when she hasn't) and she permanently sounds like she has a cold, no-one has explained why. When she does get a cold, it takes her weeks, sometimes even over a month to recover from it, where again we are up, most of the night with her. As you can imagine this has had a major impact on our lives, we have been refused from a nursery due to her problems, we are sleep deprived and ill, my husbands and I relationship has suffered greatly.

So as you can imagine I could not wait for this follow up appointment to come to seek some advice. Unfortunately I was very disappointed, the doctor was dismissive, cut me off mid-sentence, when I was trying to tell her all of the above, she kept just saying yeh yeh yeh then interrupting, when she repeated information back to me which I tried to relay, it wasn't even about my baby, referring to medicines she wasn't even on.

She said, I'm not concerned because she looks fine to me, no breathing distress. Of course there is no distress as my baby would be at A & E not a follow up appointment if she was in distress. Not once did put her hands on my child's chest, to listen to what I was telling her about, nor did she use her stethoscope. In fact, I don't think she came closer than 2 meters to my baby, so how she could say her breathing is normal is beyond me?

We asked about her new medicine dosage now she is growing. She couldn't tell us, just read us out a calculation that meant nothing to us. This potentially could result in us guessing and potentially giving an overdose. (I will keep her on the same dosage until I try and visit my GP for this information instead!). She said, she's fine and if she still is fine next time we will discharge. I tried to say its the night time when we get the major problems, she wasn't interested.

My husband and I are so low, the last 11 months have been the hardest ever. All we wanted was for the medics to listen to us, even if they can't offer more support, even just being listened to would have helped. I am majorly disappointed with this doctor in particular and the follow up we have been offered.

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Response from Manchester University NHS Foundation Trust

We are very sorry to receive your comments and concerns via the Patient Opinion website about your experience at RMCH.

It is very difficult to respond to the specific concerns you have raised without being able to investigate in detail. We take all issues surrounding patient care very seriously and would very much like to hear from you directly about this.

If you contact our Patient Advice and Liaison Service on 0161 276 8686 or by e-mailing pals@cmft.nhs.uk they will be happy to discuss this with you and we will then try to help you and your family to address the situation you describe below.

The Patient Experience Team

Central Manchester University Hospitals NHS Foundation Trust