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.
Debbie
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.
Debbie