"Surprisingly unimpressive"

About: Great Ormond Street Hospital Central London Site

My son has been treated at GOSH for 3 years now. During that time I have found outpatient communication to be non-existent. My son waited over 12 months for a sweat test for cystic fibrosis before a local paediatrician finally intervened and sorted one out nearer to home in 2 weeks. During that time I phoned the consultant's secretary around 10 times and left messages but never got a response. When I spoke to a GOSH doctor about this he said "That's not an uncommon wait for a sweat test". Considering cystic fibrosis is an extremely serious and life-threatening condition and that it could be arranged locally in 2 weeks, I am totally disappointed in this. Another problem has been constant cancellation of outpatient appointments. My son last saw his consultant in December 2013. We were told he needed to come back in 3 months as there was some concerns about his condition. We then had the follow-up appointment cancelled and it was re-issued for August 2014. We have now just had a phone call cancelling this (5 days in advance of it) and saying they don't yet know when it will be re-arranged. A couple of month's ago our local consultant wrote a letter to the GOSH consultant to try to understand what the diagnosis and prognosis is for my son. He has not received any kind of reply. On our admissions nursing staff have been pleasant and caring and facilities have been good. However I have marked down the cleanliness as we were put into a single in which the toilet was full of diarrhea, the toilet brush was caked in visible lumps of faeces and the sink was still dirty from the last patient. This despite the fact it was supposed to have be cleaned. It took two requests to staff and a lengthy period of time to get the room cleaned, during which time we had to remain in it. I am sure that the expertise and knowledge at GOSH is some of the best in the world. However the poor communication, inexcusable waiting lists and constant clinic cancellations mean it has not met the expectations we had of the centre of excellence. We are very grateful to our local hospital for managing to fill the large gaps left in the standards of care we have received to date.

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Response from Great Ormond Street Hospital Central London Site

Thank you for telling us about your experience. We are sorry to hear about the time it has taken to arrange the sweat test, the lack of communication from the administrators and the cancellation of the outpatient appointments. We also regret the lack of cleanliness of your cubicle during your recent admission. We will contact the relevant teams and share your experience to improve our service. It would help us a great deal to have more information so if you are willing please contact the Patient Advice and Liaison Service (PALS) on 02078297862 or pals@gosh.nhs.uk. Thank you.