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Child’s surgery cancelled for the third time- what now?

12 replies

cupofteaplease · 06/06/2018 20:22

My dd is nearly 13 and has had problems with her ears since birth, resulting in various surgeries including several sets of grommets, long term drainage tubes, a cholestaetoma removal, tympanoplasty etc

She started with an ear infection in August that was severe- bleeding from the ear, foul smelling discharge, significant hearing loss. Due to admin errors at the hospital, she couldn’t see a consultant until November (in the meantime, she had several courses of antibiotics from GP that did nothing at all. She was referred to A&E by GP who couldn’t treat her). At the appointment in November she was referred to surgery, and until the surgery date, she had to go to hospital every two weeks to have her ear drained.

Didn’t hear anything about an op date, then it was her next consultant appointment in April when consultant said she needed a more ‘serious’ operation. Since then, she’s had 2 operation dates that have both been cancelled.

She was due in tomorrow morning, I received a call at 5pm to say it’s cancelled. The surgeon has left the country and no one else can do the surgery. She just has to wait.

Told dd who was devastated, understandably. She’s in pain frequently and her hearing is reduced.

I’ve demanded she be seen by children’s audiology while we wait (they wouldn’t see her until after her surgery), and I asked for better pain relief, but the on call ENT consultant refused as he’s never met my dd.

It’s been 7 months since she was put on the waiting list for surgery. What can I do now?

OP posts:
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Bombardier25966 · 06/06/2018 20:26

Speak to PALS. Ask about being referred to another area where an appropriate consultant is available.

The NHS is in such a bad state and consultants are leaving in droves because they can get far better conditions elsewhere. That's what happens when funding is cut to the core.

Let your MP know what has happened too. How helpful they'll be will depend on their leaning.

li1972 · 06/06/2018 20:27

Contact your local PALS team tm and explain the situation to them. They'll kick arse on your behalf. PALS = patient advice liaison service - sometimes called PASS = patient advice support service. Should be easy to Google for your area. Good luck!

li1972 · 06/06/2018 20:27

Cross post...

Oddcat · 06/06/2018 20:30

I also say contact your local MP. You can actually phone the House of Commons and ask to speak to them ( I did this in a moment of desperation over another issue and was surprised how easy it was to get through).

Your poor daughter , I hope she gets seen soon x

cupofteaplease · 06/06/2018 20:34

Thanks for the quick replies. I had to go to PALS already just to get one of the appointments as mentioned above. The trouble is I suppose, if there’s no consultant to do it, then it can’t be done! I think it might be time to ask for another hospital. But I fear that will take even longer than waiting for the original surgeon to come back. Also, he has done all of dd’s surgeries so I’m not sure she’d trust anyone else. Feel like we’re between a rock and a hard place...

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cupofteaplease · 06/06/2018 20:36

Sorry, I perhaps didn’t make it clear that the surgeon has left the country on compassionate leave, not for ever. He is due to come back sometime but they have no idea when that may be...

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takingsmallsteps · 06/06/2018 20:38

How is her hearing? I can't help with the medical issues as my expertise is in Audiology but I would suggest asking for a referral to your local department for consideration of a hearing aid. In particular, a bone conduction device which would aid your daughter's hearing without risk of infection (it sits behind the ear and sends sound through the bone, so not blocking up the infected ear). At the very least it would give her access to sound while waiting for surgery, it must be so difficult and isolating for her if she is in pain and suffering significant hearing loss.

cupofteaplease · 06/06/2018 20:48

Thank you takingsmallsteps for the advice. My son wears a bone conductor hearing aid and I too think this could be beneficial for my dd in the short term.

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cupofteaplease · 07/06/2018 15:25

It gets better... they rang me at 8.30 at work this morning to say that the surgeon had turned up for work (after leaving the country yesterday morning apparently...) and could I bring her in. By this time, she was at school and she’d eaten some breakfast so the anaesthetist refused to give her a GA. So 3 times cancelled, each time for admin errors.

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DPotter · 07/06/2018 15:38

Things may have changed since I was in health management, but a hospital cancelling for the 3rd time, faces a fine and is required to get the patient in, in very short order. Either through PALS or go straight to the chief exec to find out happen the next date will be. Keep harrassing them !

cupofteaplease · 07/06/2018 22:08

That’s interesting DPotter! I will be chasing up tomorrow.

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fionahayward · 04/09/2018 13:47

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