"Why would you delete a referral?"

My son has had various health issues since he was born in 2019 - at 10 days it was allergies, at six weeks old for hayfever, there were a couple of Out of Hours visits for breathing over the following month and when he was 19 weeks old he was put on a ventilator because of RSV and has been in and out of hospital since. It’s no secret that I felt the ball was dropped and that watchful waiting was doing more harm than good when he was a baby, but when he finally got a consultant and treatment plan we saw some improvements. However, the asthma treatments weren’t having an impact on his worst flare ups, so the consultant referred him to ENT in June 22 to have his windpipe etc checked. The day before, Audiology also made a referral to ENT to have his ears suctioned.

When he got his appointment for the ears suctioning, we saw the doctor and it was successful. At that appointment I explicitly asked about his other referral and what the process for that would be, I was told it was another clinic and I’d get a letter in due course. 

I did not get another letter. In January, his consultant said that we might be stuck in the backlog but it should come in soon. At his appt in June, the consultant decided to chase again as it had been a full year with no communication and might be lost. I called ENT myself this morning to chase because he’s been actively unwell for the last week and struggling with breathing overnight - only for ENT to tell me there was never a request in the system. I contacted the consultant's secretary who could find the referral but could see it had been deleted but with no explanation why. I assume whoever did it thought that the two original referrals were the same, even though they came from different departments and if they’d read them asked for different things.

My son has been rushed into A&E 7 times since Nov 22 with respiratory distress, but two were actually classed as respiratory failure. The most recent failure was six weeks ago while we were abroad and he also had a seizure and we thought he was gone. There have also been 3 or 4 occasions where he was well enough to go to Out of Hours for treatment instead of A&E, and countless others where he’s sick but we're told that it’s him, we know he does this, treat him at home until he really needs steroids.

In the last week he has had almost constant croup symptoms, day and night, two doses of steroids and neither the GP or his current consultant can do any more to help him because they need ENT to check his windpipe first. But ENT deleted the appointment, didn’t notify anyone, and he has been suffering needlessly for months because someone didn’t read his referral properly.

I am beyond furious at the standard of care my son has (well, hasn’t) received. It may be his windpipe isn’t the problem, but any other investigations haven’t been able to proceed until the windpipe was checked. 

Do better.