"Usually excellent, this time very disappointing"

What I liked

My baby son is being treated for cancer, and unfortunately that means for a variety of reasons that we are frequent fliers at both QEII and the Lister. His main oncology treatment is provided at Addenbrooke's, but for parts of his care which can be provided outside of that hospital, we are able to use QEII (our local hospital), and where necessary the Lister. In our experience over the last six months, from before the cancer was diagnosed and throughout the treatment to date, our care at both sites has been excellent. We routinely need to use QEII if our son pulls his naso-gastric tube out and it is either the weekend so the Community Team cant come out to us, or if the Community Team is too busy to do it before his drugs and top up feed are next due. Staff in the Childrens A&E department at QEII have always been very professional, friendly, understanding of our situation, and have done their best to keep our visits as brief as possible.

What could be improved

My son pulled his NG tube out on Tuesday night (6 March). My wife called the Community Team first thing on Wednesday morning, who were unable to come out to us until midday. Wanting to get it sorted before then, my wife took our son to the Children's A&E at QEII instead at around 10am. They checked in at the main A&E reception, stated what was wrong, and were directed to the Children's A&E, as usual.

Our son has chemo every few weeks, and is often 'neutropaenic' which means he has very little immune system. We are instructed to tell hospital staff this when we arrive, as he needs to be put in a separate area while waiting, rather than with other patients. We are usually directed to a small triage room, where we wait for as long as necessary until nurses are ableto put a new tube in. It is a procesdure which takes a few minutes. Ordinarily we do it with him sat on either my or my wife's lap, holding him firmly, as he gets more distressed iflaid down and restrained, although I understand that is the more traditional way it is done.

On this visit, once in the Children's A&E department, my wife was told that this was now a minor injury unit, and she should take our son to the Lister - another 15-20 minutes in the car. We know that service reconfigurations are happening, but we have been to Children's A&E and QEII since the changes were made to the services a couple of months ago, and no one suggested that time that we couldn't go there to have an NG tube re-inserted. After some debate, staff agreed to do it at QEII on Wednesday, but made much more fuss than normal (or in our view necessary) about moving other patients to keep our son isolated rather than use the room, and insisted on doing it with him laying on a bed, not being held. My wife was made to feel like the staff simply did not want to help our son on that day, and would far rather them to have gone elsewhere.

Anything else?

Please make sure that all staff understand the changes happening at the QEII site, and are consistent. If the Children's A&E at QEII wont do NG tube re-instertion (something which clearly doesnt need a full A&E unit, as the Community Team are able to do it in our home), then why did the receptionist direct us there? And why have the A&E staff been happy to do it in the past (and since the recofigurations). We consider that we are fairly well versed on which hospital services we need to use and when, because of the situation with my son, but how other patients are expected to know with the very mixed messages is a big concern.

Ordinarily, in our experience, we could not have been treated better by this NHS Trust, at either QEII or Lister. But this week was poor, and my wife made to feel bad with no need whatsoever.