"Delay in emergency treatment for my son"

About: Chelsea and Westminster Hospital NHS Foundation Trust Frimley Health NHS Foundation Trust

(as a parent/guardian),

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.

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Response from James Taylor, Media and Communications Manager, Frimley Health NHS Foundation Trust

Thank you for raising this matter and I hope your son is now receiving the care that he needs. From your comment it seems that your issue of concern is with the specialist hospital and not with Frimley Park Hospital. However if this is not the case and you have any feedback about the care you received at Frimley Park please let me know and I will ensure it is followed up [james.taylor@fph-tr.nhs.uk].

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Response from Sian Nelson, Membership and Engagement Manager, Chelsea and Westminster Hospital NHS Foundation Trust

I am sorry to hear about your experience of Chelsea and Westminster Hospital. I will direct this concern to the relevant team and respond to you shortly. It would help us investigate further and provide a thorough explanation if we have further identifiable details from you such as your child's name and date of incident.

Please could you contact me directly on 0203 315 8548

With thanks

Sian Nelson

PALS Manager

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