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Old 09-07-2018, 01:09 PM
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Data Protection Act 2018

Hi everyone,
Because of a matter that happened to me July 2016 to February 2017 I am seriously thinking of NOT allowing the Epilepsy nurses having access to my details or letters written by my neurologist.

Can I do this as I am still very angry with these women. They did not help me to stop zonisamide. I cannot even consider them to be "Specialists". I just wonder what they do know. They had access to the letters written by a previous neurologist about me. One of his letters said that I started zonisamide in July 2016 and he was surprised that side effects from a previous drug (Kepra) happened many months after starting it.

I had telephoned the epilepsy nurses in January 2017 telling them that I was "aching", had burning patches all over my body and now what I have found to be called "parathesia". Aching or "flue-like symptoms" is well known to be a side effect of zonisamide. It may sound small but it is absolutely awful.

As I got these side effects about 7 months after starting zonisamide these Epilepsy nurses immediately assumed that it was not the drug and they expected me to wait until 2 March 2017 another 6 weeks. As these "Epilepsy nurses" did not help me and took no notice of the other information written in these letters about side effects starting many months after starting a medication I do not want these nurses to have any access to the letters that my neurologist writes to my GP and me.

I do know quite a lot about the Data Protection Act and people who do not need to know information should not be able to view it. This has led me to ask can I stop these Epilepsy nurses having access to them?

I have even told my new neurologist not to write in his letters the contact number of these Epilepsy nurses as I will never contact them again.

Can anybody help me with my query.
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Old 09-10-2018, 08:54 AM
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I think blocking access to these notes could make your situation WORSE, not better.

Edit: Sorry, re-read post.

Epilepsy - Primary Generalized
Schizoaffective - Bipolar

Epilepsy Meds - Depakote, Topamax
SZA Meds - Depakote, Invega Sustena, Prolixin

Last edited by resaebiunne; 09-10-2018 at 08:57 AM.
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Old 09-10-2018, 09:42 AM
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Data Protection Act May 2018

Hi Reseabiunne,

Thanks I know you re-read my post.

They cannot make my situation worse. I know that Consultant Neurologists must have access to my medical notes and my GP. They can help me. I now have a new neurologist who is a wonderful man and is so friendly and explains things but I do not want the Epilepsy Nurses to have access as I know they can never help me. The Epilepsy nurse who I spoke to read the letters written by my neurologist (copies which I get too) but took no notice of them. Because of this they did not know my situation and would not take any action.

I know that my hospital - and probably yours too - work on a system - so I wonder if it is possible. I have written to my neurologist and I will be seeing him March 2019 so I will mention it again.

Thanks for your post anyway.

Last edited by Debbie53; 09-10-2018 at 09:57 AM. Reason: Budgie stood on my computer keys and decided he wanted it posting.
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