Have come back to the thread because, on Friday, I received yet another text from the (not so) local hospital (we live in an area where there are 2 hospitals that we can be referred to which are both around an hour’s drive away with nothing closer, not even a private hospital) asking us to complete their questionnaire Co confirm either
a) we had sought treatment elsewhere
b) the issue has resolved and we no longer wish to stay on the waiting list
c) we would like to discuss with the consultant whether the treatment is no longer needed
or
d) whether we wish to remain on the waiting list
This is the 4th time we’ve been asked to complete this futile exercise - last time, I received the same request twice in 4 days either side of a weekend and, when I rang to query why I’d had it twice so quickly and also to confirm it was for the same reason (you get the same thing if you’re waiting for an appointment or surgery so I wanted to make sure I wasn’t confusing things!) they said that we should receive it when we reach 40 weeks on the waiting list and then at similar intervals until we reach the top of the waiting list!!
DS was referred to ENT just after his second birthday for issues with severe snoring (he snores worse than his DF - and that’s saying something!), possible sleep apnoea with daytime somnolence and enlarged, asymetrical tonsils that, even with no evidence of infection or inflammation, touch. He is also diagnosed with asthma and possible allergy induced wheeze plus reactive eczema. His first ENT appointment was when he was 3 years 3 months where they agreed that he definitely needed skin prick testing and further input from their team once that was done. He was prescribed steroid nasal spray and saline washes to try to improve the situation - we used them for more than 6 months with no beneficial effect so stopped them - the skin prick test took around 3 months to be done and showed allergy to pet dander, house dust mite and tree and grass pollens. Their only solution was to have the steroid spray and wait to see the ENT surgeon again. We were lucky, that follow up appointment only took another 3 months to come through (so 6 months from when he was last seen by the team) and the consultant was immediately happy to add him to the surgical waiting list and said it should take around 6 months for him to have surgery. He also said they would continue to follow him up afterwards as, if the snoring and sleep apnoea weren’t resolved by surgery, he would need further investigations.
That appointment was in April last year and the N only thing we’ve heard since then was, when I chased up in October last year, when I was told that he was 115 on the waiting list and it would possibly take another year for surgery depending on whether more urgent cases were added after him that would take precedence. I’ll probably contact them again in a few weeks to see if that has changed at all especially as I’ve had another of their ‘questionnaires ’ to complete. I’m sure they hope parents will get fed up waiting and seek private treatment but we can’t afford to - while some people may be able to put the cost on a credit card or cancel a couple of holiday’s to be able to afford to, or even pay for a private care policy such as Benenden Health, we aren’t amongst them so rely on the NHS for treatment no matter how broken the system is and how long we have to wait for appointments or surgery.