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DS needs urgent (but not emergency) surgery - apparently that takes up to 6 months !

9 replies

DesperateDoris · 19/05/2014 15:32

Ds was admitted as an emergency case earlier this month and sent home, after being stabilised, with notes saying that he needed surgery to prevent long term side effects from his condition and that this was needing to be done "soon" as the chances of long term damage increases with each passing week.

We were told that meant he'd be called back to the hospital for this in 4-6 weeks.

Now I find out that first of all he has to have an outpatient appointment and 3 weeks have now elapsed but "not to worry" we should have an appointment in a few more weeks. Then he is guaranteed surgery in 18 weeks to meet targets. (18 weeks from the outpatient appointment not 18 weeks from the date he was previously admitted and diagnosed).

So, we're looking at getting the op in about September/October just as starts a new school year, totally disrupting his schooling. (Either that or we'll have to cancel our family holiday if he is fortunate to have it happen sooner than September but I very much doubt he'll be that lucky).

How can I sort this out. When in hospital they stressed the need for the procedure to be done soon but now discharged we are at the mercy of "the system" and no-one seems to think it is that important, because I'm dealing with admin staff/secretaries all the time and it just seems to be a routine referral as far as they are concerned. I don't want to make a pain of myself but I can't help thinking if it was their child they'd have been seen and operated on by now.

OP posts:
Are your children’s vaccines up to date?
Forgettable · 19/05/2014 16:56

Hi Doris

Poor DS, I am sorry to hear he has been unwell

Can you throw self on mercy of GP, see if they can expedite matters?

beautifulgirls · 19/05/2014 20:37

Try contacting the PALS reps at your local hospital. They can help you find out and check what the situation is and help you fight your corner for him.

Thisisanoutrage · 19/05/2014 20:50

I'm no help. We're in the same boat. DS is awaiting an adenotonsillectomy. He has sleep apnea and has tonsilitus at least once a month.

GP referred him in Dec, it was 10 weeks to see the ENT and now we're doing the 18 week wait for the operation.

It's so hard seeing them suffer. We're at the GPs with him all the time. they're writing a letter for us to try and help speed things up, but I think he'll have the full wait.

InSpaceNooneCanHearYouScream · 19/05/2014 21:20

It entirely depends what the surgery is. If it's grommets then I'd be happy to wait. If it involved heart/ lungs/ kidneys/ liver then I'd be kicking up a huge fuss!

Timeandtune · 19/05/2014 21:26

What I would do is befriend the consultant's secretary and ask to be put on the list for a cancellation . If possible leave her/ him your mobile and say you could be available at short notice.

It might also be possible to get the op done sooner in a neighbouring hospital. Again worth asking the secretary.

DesperateDoris · 19/05/2014 21:35

I don't want to out myself by detailing the procedure.

It's not life threatening at the moment but there are very specific reasons why it should be done as soon as possible. One of which is greater risk of mortality when he is much older.

I have found out that the medical specialty it falls under do have to deal with a lot of cancer surgery and apparently they are at risk of falling behind with their oncology target waits etc so.......

Dh and I are kicking ourselves for not shouting louder earlier and assuming that the GP's "watch and wait" approach was normal practice in situations such as ds's.

Sooo wish we could afford private health care.

OP posts:
123rd · 19/05/2014 21:41

I would speak to the consultants secretary and request that your DS is put on the short notice cancellation list-if that's available.

InSpaceNooneCanHearYouScream · 19/05/2014 22:11

Well, if delaying it could impact his future health then I would be speaking to the consultants secretary to see what the consultant thinks about the delay. He is the one that can tell you if it's ok to wait or not. Good luck.

InSpaceNooneCanHearYouScream · 19/05/2014 22:22

What I mean is insist on speaking to the consultant, don't just rely on the secretary deciding how urgent it is

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