View Full Version : Feel like banging my head up a brick wall!
22nd February 2006, 11:53 AM
:nut: :nut: :nut: Well I went to see my g.p yesterday to ask him some questions about Sammi. Turned out to be a complete waste of time and confirmed my suspicions that the ROH are not sharing information with anyone. My G.P showed me all the information he had and not even that was up to date. He had a record of her having her brace casting but thats it, he had to ask me why they did it as there was no explaination and they had it down that it was done under GA and it wasn't. There was no record of her mri either. He tried to reassure me that if there was any cause for concern they would tell me, I'm sure they probably would but it's not the point I need to know what they are doing etc.
I also prooved that the ordeal of her casting had scared Sammi a lot as she reacted exactly the same to the g.p as she did to the staff at the childrens hospital. It looks like from now on untill she is old enough to understand better she is going to be terrified of dr's and hospitals. Lots of fun.
So i'm back to having to rely on my consultant who will not escape me next time! I will find out what i need to know or they are going to be really fed up of me phoning them up if i get nowhere. No more Mrs Nice Mum! :soapbox:
22nd February 2006, 12:24 PM
I understand your frustration and I don't blame you.
I'm glad to see you've reached the point where you really mean business.
Firstly,get the medical records under the freedom of information act.You are entitled under the data protection act 1988 to access your clinical records.
the second download on that site gives the phone number of the person to talk to.
According to their website, there is no charge for info which costs under £450.
Once you have her records you will know exactly what you're dealing with and know exactly how to approach the situation.
Before your next appointment, ask the nurse at the clinic to see the consultant as there are a list of unanswered questions you need to put to him.Be firm but pleasant,unfortunately, most clinic staff are only trying to get through a hectic day.However make it quite clear that you want a clear understanding of your daughter's diagnosis and the treatment plan for her.
22nd February 2006, 01:18 PM
Hi gadget sorry to hear about your treatment. I think Sinead is right i would ask for your medical records.
I am looking into getting my medical records from Sunderland NHS trust which is where my last set of x rays were taken.
So Sineads post spurred me on to check the trusts web site. And to my horror i found they make the following charges
As a patient you will have provided information about yourself that helps us to give you the best treatment. This information is kept on record. Maintaining patient confidentiality is a legal duty of everyone in the NHS and all computerised information is registered under the Data Protection Act 1998. Under this Act you are entitled to view your medical records and/or request a copy of them.
Should you wish to access the records of a deceased person you must be a personal representative or someone who has a legal claim arising out of the death. This is covered by the Access to Health Records Act 1990.
To gain access to medical records you will need to complete an application form and a charge of £10.00 plus 10p per photocopied sheet and 75p postage and packing will be made.
To find out more detailed information about accessing medical records or to request a form, please contact us at the address below:
Grr my treatment was rubbish and the trust wants to charge me for gaining information about me which by rights should be free.
Thats the NHS for you
22nd February 2006, 04:58 PM
Gadget, if I was in your situation, I would follow a few avenues at the same time.
First, get clear what information you need, I am no expert on infantile scoliosis, so others might give better advice on that, but I would think you need to know what the cobbangle is and at what level, and whether between various appointments there has been any progression. Maybe also whether there are any other abnormalities.
Then go about gathering this info using different sources. Askm your GP to write to the consultant on your behalf, asking for this info. Now you have seen him, a phonecall to your GP might be enough. If you cannot speak to him when you ring, ask the receptionist what would be a suitable time to ring back. Also, ring the secretary of the consultant you have been dealing with and ask her whether she can ask the consultant about those bits of factual information (which should be straightforward), phone back every 1-2 days till you get what you want. Also take the freedom iof information line as indicated by Sins, but be prepared that there might be a charge as others indicated. If within a reasonable short time you do not get anywhere, contact the PALS (Patient Advice and Liasson Service (I think)) at the ROH to ask them to help. That is their job!!
The other issue you need to get clear rapidly is about the best possible treatment for SAmmi, and i am sure currently the choice must be between bracing and serial casting. Again, others are better placed to advice you, and i know that Celia is active member of a specialist infantile scoliosis forum, as others here might be. Hopefully theu can give you the right address to post there.
Use your anger and frustration constructively, and get on top of things as quick as you can
In the end, if you are not happy, go elsewhere!!
22nd February 2006, 07:30 PM
Precious time is being lost. You HAVE to see a scoliosis specialist. If Sammi's curve is progressive, she needs immediate treatment. Her life and future is dependent on you, this is what you should focus on. If you wait too long the problem will get worse and the only recourse will be surgery and let me tell you, the outcome for surgery on infantile scoliosis is very different than the adolescent variety. Progressive infantile scoliosis is very VERY serious. I would get Sammi into serial casts ASAP. I recently came across an article on the natural history of infantile idiopathic scoliosis and I wept ! I was filled with rage against the medical profession for treating these children as guinea pigs !!!! How could they allow such a thing on a life so dear and precious ? How could people sit by and watch this happen ????!!!! My precious little girl could have been one of the examples in that article - her curve was 60 degrees when I discovered it and I thank GOD each and every day for my daughter's good fortune that today her curve is 1 degree. I'm going to attach a link to this article so you can read it and see how very serious progressive infantile scoliosis is.
22nd February 2006, 08:10 PM
Keep pestering them! It's the only way! You deserve answers! Good luck! :squeeze:
24th February 2006, 10:31 PM
Sorry to say that your child's records mean nothing to hospitals, clinics, doctors , nurses etc. They become just a set of papers and they don't even keep very good track of where they are. Always ask before you leave the docotr's office for a copy of tests and whatever the doctor has written out. Always ask for copies or photoes of xrays. Clinics etc. will think you are a pain in the ass but what do you care what they think. You and your child will need these records for the rest of your child's life. My physicians now know that I 'm going to ask for copies of stuff but they give them to me anyway without groaning. I always offer to pay for copying but so far I've never had to pay.
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