"Awful and unhelpful"

About: Trafford General Hospital

We were sent a referral letter by our GP due to him suspecting a lazy larynx in my 5 month old daughter. We chose Trafford hospital as it was the nearest date even though we live in Oldham. The appointment was then cancelled but we were advised that extra clinics will be run and an appointment will be sent shortly. Instead, we were just put back on the waiting list and were sent an appointment for 8 weeks later. At the appointment we were told that they suspect asthma, allergies and sleep apnoea so we were told to come to pick up a sleep study machine and to tell our doctor she needs to see a paediatrician instead. Then after my partner had booked a day off work, we were called the day before to say the machine was broken and to come back in 4 weeks time. During this time, we visited our GP and he advised it is definitely ENT she needs to see so we booked another appointment. Whilst waiting for this second appointment, the sleep studies took place. We then returned for our second appointment and were told our daughter has sleep apnoea and they believe it is an ENT matter after all as she does not have asthma or allergies and they suspect it is a lazy larynx (which our GP advised from square one). When I asked the consultant to explain sleep apnoea to me a little more, he laughed and said to not ask him but to wait until we see the specialist he is referring us to at Royal Manchester Children's hospital. I explained the above to the consultant and that all of our family live away and that as a young mother I am finding this all very difficult (constantly worrying that my baby will suddenly stop breathing as sleep apnoea is a common cause for SIDS) and would like this to all be done as soon as possible. He then asked "how far away do your family live?" I advised 100 miles away and he said that it wasn't that far! I didn't believe that this was fair or professional as this was his own opinion. Despite this, he said that he will make it an urgent referral. I walked out of the appointment trying to hide my tears from my daughter as I was extremely shocked that she has sleep apnoea and extremely frustrated that he explained nothing. Surely if he can diagnose it, he could explain what it is to me? Or even a leaflet? Finally, to top it all off I have now waited 2 weeks for the appointment to see her specialist and so I contacted Manchester hospital only to be told they have received a routine referral and not an urgent one! This has now been ongoing since March when I first saw my GP. I would have thought that the doctors would be more reassuring for a young parent and also take things more seriously as it is a young infant with breathing difficulties and sleep apnoea.

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Response from Central Manchester University Hospitals NHS Foundation Trust

We are very sorry to receive your comments and concerns via the NHS Choices / Patient Opinion website regarding your experiences following your appointments at Trafford Hospital with your daughter.

We apologise for the significant delay in responding to your concerns.

It is clear from the description you have given of your experience that you have not received adequate support and have not been given clear information to help you manage your daughter’s symptoms. We are very sorry to hear how you have been left feeling and would like to speak to you to enable us to investigate your concerns thoroughly.

It is very difficult to respond to the concerns you have raised anonymously and we need more information to look into your specific case. Please be assured that we take all issues surrounding patient care very seriously and would very much like to hear from you directly about the concerns you have raised. 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.

The Patient Experience Team

Central Manchester University Hospitals, NHS Foundation Trust