In complaining to CEO?

[WhateverFlowsYourBoat]

Hi all,

I have a 18 yo DD born on Feb so just turned 18 (I know, she's an adult but it'll make sense) who was scheduled to have a spinal fusion for her kyphoscoliosis on June 2016 at the age of 17 but waited since she was 15-16. That didn't happen.

Her spinal degrees are somewhat over a 100 and also a 75, so not good. It's affecting lungs and everything pretty much. It's a juvenile type of scoliosis but surgery was a last resort due to the risk to nerves as her spine is twisted really badly. Getting worse too.

She couldn't have the op because her throat was too narrow for the breathing tube so they decided to refer her to ENT so that they could have an investigation and see if it can be widened with surgery. That referral didn't go through until I chased it up in January.. 6 months. By then, she had more worsening symptoms like incontinence.

She was seen once by ENT and then scheduled for a pre-op but the op was cancelled several times. The reason I still don't know.

She recently had a scan but it's been several weeks. I have tried calling.

Is there anything I can do because DD has been waiting for 3 years for this surgery and I can't see her in the amount of pain she is in. She takes 60mg of Co-codamol daily but she may not be able to take muscle relaxants due to her lungs..

Sorry for it being long

If I were you I'd contact PALs tomorrow morning. When I've had problems with the hospital I've always found them very helpful.

WhateverFlowsYourBoat I would get really angry but in a nice way. I would speak to the PALs or Patient Liaison or whatever but also personally I would speak to my MP. I have no idea if bringing a formal complaint would help or hinder the situation but I would consider suing the hospital once the treatment is finished, if this would help other children in pain no be forced to wait so long.

By being angry but nice i mean be angry but do not alienate the people who are trying to help you. Get on doctor, nurse or secretary who is on your side and will help you. I worked in the NHS a long time ago and I did sometimes go a bit further for those who seemed to be in need, seeing if they could be fitted in etc. So I do believe getting someone on side is very helpful.

You and your dd have been horribly failed and I am so sorry.

I have tried that once TheFairyCaravan, it helped getting an emergency appt but not much more.. but then that could be because I got 2 drs to chase it up as well. I'm not sure

Get one (or more) doctor....

Italiangreyhound I have my DD's neurologist going with the case and I'll see her in a few weeks and getting her to chase it up yet again. I've got my GP who has seen the scan results and I've asked him to chase it up again.

PALS, I'll try again but the MP suggestion I didn't think about

WhateverFlowsYourBoat go back to them and ask who they can refer you on to because the service is failing you and your child. Whether she is 18 or not should not matter.Ask to speak to a senior member of staff. Go to the hospital in person if necessary. I know it is hard but what else can you do. Persistence, keep all the info if how they are failing your child.

I honestly hope she won't have any more worsening symptoms whilst this is happening

"I've got my GP who has seen the scan results and I've asked him to chase it up again."

When did you ask him to do that? If it was over a week ago I would chase again. Ask for a phone call with him if an appointment is not appropriate. Just keep going. Please really explain, she is so much pain, use the words about deteriorating, medication etc etc. You need them to know how bad it is. I am so sorry.

This is such shit. I pay tax and I want an NHS that works for people like you!

"I honestly hope she won't have any more worsening symptoms whilst this is happening"

Of course, and I do too, but don't say that, just say, her symptons are worsening, because that is what has happened so far, isn't it? Don't sugar coat it for them.

i am so sorry.

Italiangreyhound

I'll go on Monday and see if I can get someone to just talk to me more than just throwing a phone number my way

Italiangreyhound

I saw it with the GP last week and he told me he'll call me on Wednesday/Thursday if he doesn't get a reply from ENT. They've analysed the results, it's just DD seeing them, that's left

Good luck, be angry but nice, you now it is not their fault but who can you speak to next etc.

Not many now that DD has moved on from paeds..

PALS - I have tried but will try again
Adult drs - 2 are trying
MP - Well, I'll try that and actually hope this new one will be more helpful in listening than the previous one
Paeds drs - 3 have tried writing letters but not sure if ENT have taken it in

I honestly do not know what else to do

Any news OP?