View Full Version : lost the plot
12th June 2007, 10:05 PM
IN MY LAST POST ID DECIDED TO GO WITH THE FLOW AS I DIDNT SEEM TO BE GETTING ANYWHERE BUT I WOKE UP YESTURDAY MORNING AND THE FIRST THING I THOUGHT OF APART FROM MY MORNING COFFEE WAS HOW DARE THEY.I SIT FOR HOURS ON THE INTERNET READING STORIES ARTICLES ON SCOLIOSIS AND COURTNEY IS NOT RECIEVING THE TREATMENT SHE SHOULD.I GATHERED ALL MY INFO ON BRACING,SURGERY AND HOW IMPORTANT IT IS TO BRACE EARLY ON.COURTNEYS MEDICAL HISTORY AND HOW SHE HAS BEEN LEFT UNTREATED FOR A YEAR WITH A LARGE CURVE .ALL SO HOW GOS EXPECT HER TO WAIT ANOTHER TWO MONTHS JUST FOR A CONSOLTATION ON WHEN SHE WILL HAVE HER CAST FITTED.SO WE COULD BE LOOKING AT MONTHS.I ALL SO TOLD HIM HOW I READ ALL OF YOUR STORIES AND UNLESS IM NOT READING CORRECTLY SHE IS THE ONLY ONE NOT BEING TREATED WITH SUCH A LARGE CURVE.HE HAS WRITTEN TO MR TAYLOR AT RNOH TO SEE IF HE IS AVAILABLE TO SEE HER BUT HE DOESNT HOLD OUT MUCH HOPE,AT LEAST HES TRYING.IVE SENT A STINKING FAX TO MR TUCKER AS I CANT GET HOLD OF HIS SECRETARY.IM ALL SO WAITING FOR A CALL FROM MY MP MICHEAL HOWARD TO MAKE AN APPOINTMENT.
WHAT WOULD YOU ALL DO ?
IVE EVEN THOUGHT OF GOING TO THE PAPERS.
SHARON X X
12th June 2007, 10:38 PM
If I were you I would threaten them with going to the papers. I think threatening would be quicker than going straight there. If threatening doesn't work then go to the papers. Then maybe a doctor could contact you with help. Do not tolerate this! It's not fair! Courtney doesn't deserve it. I wish you all the luck I can. I know what it feels like having been messed about my self. Good luck. Please let us know what you decide to do!
12th June 2007, 10:48 PM
I would defantly go to a differant Doc.Do you live close to Saltlake city ? Dr Smith is a great Doc I take my son there he is 3 and has congential scoliosis.If you want I can give you his phone number.I live about 7 hours away I would go to him if I lived across the world.I would not wait much longer as her curv can change fast.Also did they ever say what her scoli was caused from.James has hemmi vertabra and casting or braceing will not do any good. I was also told that the only thing to do was to fuse ,but Dr Smith said no way James has whats called vepter implants.
13th June 2007, 07:31 AM
Sharon, It does sound like you are being crapped on by the system you are working through. Can you change doctors? In your position I would be calling all doctors that have seen my child and begging for them to help make things move faster for Courtney. Good Luck and I'll be sending some hugs your way.
13th June 2007, 10:06 AM
Here are some suggestions for you. You have probably tried them all - but try again! Be a nuisance to everyone and make as much noise as you can (whilst attempting to remain sane and keep your blood pressure under control!!):
1. Contact Pals (patient advice and liason service) at GOSH tel: 020 7829 7862
They promise to:
Contact you in person within 24 hours of your request.
Advise you on the options available and help you to resolve your problem.
Deal with your concerns in confidence and only pass on information to other departments with your permission.
Keep you regularly informed of the progress of any action you ask us to take on your behalf.
2. If you're still not satisfied contact Helen Forgacs (email - forgaH@gosh.nhs.uk)
3. Contact Mrs Carol Richards at SAUK tel. 020 8964 5343. She is a trustee of Sauk, lives in Kent and has a daughter with Scoliosis. Her private number is 01732 851852. It might be a bit cheeky to use this number but I got it from the BBC News website. She may have some ideas or suggestions.
4. Go back to your GP and ask for referrals for 2nd, 3rd, etc, opinions. RNOH have the following consultants: Mr Taylor, Mr Lehozsky, Mr Casey, Mr Allibone, Mr Harrison, Mr Tucker, Mr Wilson, Mr Nordeen, Mr Malloy and Helen Nafis.
Hope this helps a bit.
13th June 2007, 12:46 PM
If it were me, I wouldn't bother going to the papers. I think that's just a dead end and will take your focus off of getting better treatment for Courteney. I don't think it will do any good either. If in the unlikely event you do find someone stepping forward to treat her, you might not want them to because of lack of experience etc.
I think your best avenue here (apart from contacting PALS, which is an excellent idea, if you haven't contacted them already) is to chase up Mr T at RNOH. If your surgeon is already making contact with him, then you are in the position to chase his secretary and ask what his opinion was. As you know, Erin was seen the day after he read the referral by Mr T, so he can see urgent cases when they arise (unless i was just lucky). However, I do know that he is off on holiday soon as he had to move Erin's cast date, so that may be a problem. Just a hint (and please don't take this the wrong way), if you speak with any secretaries, I find the nicer you are, the more they help you. I know how angry and frustrated you are, but really try and keep cool and calm when speaking with them. There is a limit to what they can do, but they WILL go the extra mile if you strike up a rapport with them and they will try to help.
Another option would be to try and speak to Sue Lister, who is the spinal liaison nurse at RNOH. She may not be able to do anything, but she liaises with all the consultants and may be able to help. You can get her on the normal RNOH number.
Please ask if you think i can be of any more help, being already a patient at RNOH.
That's all I can think of for now. Good luck!
15th June 2007, 05:49 PM
I agree that perhaps going to the papers may not help that much!
I would definately contact PALS if you've not spoken with them yet. They can give you advice but also pass on your complaints to a manager who can look into the situation. This is what PALS at the Woodlands did for me, though as you may have noticed in my other post the manager themselves weren't that great!
I would try that and see if the person PALS put you in touch with to help you out does anything to help you out!
While this is going on, it may be a good idea to chat with your GP and explain how dissatisfied you are and ask to be refferred to see someone else.
Hope you manage to get it sorted!!!
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