"Delay in emergency treatment for my son"
About: Chelsea and Westminster Hospital NHS Foundation Trust Chelsea and Westminster Hospital NHS Foundation Trust London SW10 9NH Frimley Health NHS Foundation Trust Frimley Health NHS Foundation Trust Camberley GU16 7UJ
Posted by Parentjejunostomychild (as ),
My son is severely disabled and is fed by a jejunostomy tube - a tube that goes into his stomach and then into his intestines so that he can have milk without reflux (being sick). The tube has to be inserted by an Interventional Radiologist in an Interventional Radiology laboratory. This is done at a Specilist Hospital in London where we go for paediatric gastric care.
Last week we were concerned that the tube had become displaced - that it had moved back to his stomach. We went to our local hospital where after an X-Ray, it was confirmed that this was the case. However, in discussion with the Specialist Hospital in London, it became clear that they would not be able to bring my son in to redo the Interventional Radiology procedure outside working hours. Hence, with a bank holiday, we were told that Matthew would have to wait 3 and half days before having his tube re-inserted and meanwhile he would only be able to be fed on water and diaralyte into his stomach - if given milk without the tube in place, there is too high a risk that he will be sick and aspirate (choke). This meant that Matthew was deprived of food from Friday afternoon until Tuesday lunchtime when the tube was successfully re-inserted at the Hospital in London.
My concern is my son was deprived of food for over 3 days because the specialist hospital does not have an emergency/on-call system for Interventional Radiology that supports doing these procedures out of hours or at the weekend. I do not think it is right to deprive a child of food for that long because of this and the specialist hospital that provides this service should put in place emergency access at the weekend to prevent vulnerable children being unnecessarily starved for several days at a time due to the unavailability of staff.
I would also like to say that the medical and nursing care, when received, was excellent - my concern is the lack of system organisation to manage children like my son at the weekend and particularly a bank holiday weekend.