Comments on: Battle to find Cellcept http://birdshot.org.uk/blog/index.php/archives/2486 support and information for people who have birdshot a rare form of posterior uveitis Wed, 08 Sep 2010 14:57:35 +0100 http://wordpress.org/?v=2.8.5 hourly 1 By: Anke http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-193 Anke Sun, 11 Apr 2010 11:59:05 +0000 http://birdshot.org.uk/blog/?p=2486#comment-193 I have consultants at two different hospitals, neither of which is that local to me. As a result, my GP does most of the monitoring, although not the prescribing. I've taken to requesting copies of all blood tests for myself (as these could be done at either hospital or at the GP) and have built up a consolidated spreadsheet and graphs to monitor the trends over time. It's often quite tedious getting the results out of the hospitals, but worth it to have the overall picture which I can then take to consultant appointments. I have consultants at two different hospitals, neither of which is that local to me. As a result, my GP does most of the monitoring, although not the prescribing. I’ve taken to requesting copies of all blood tests for myself (as these could be done at either hospital or at the GP) and have built up a consolidated spreadsheet and graphs to monitor the trends over time. It’s often quite tedious getting the results out of the hospitals, but worth it to have the overall picture which I can then take to consultant appointments.

]]> By: Rea http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-114 Rea Mon, 22 Feb 2010 19:44:16 +0000 http://birdshot.org.uk/blog/?p=2486#comment-114 There is technically no maximum amount or minimum amount you can order from your GP. It depends on your relationship with your GP and your GPs relationship with your consultant!!!! GPs are often quite unprepared for, and lacking in knowledge of, rare diseases and Birdshot is a rare disease. So, they will often take advice from the consultant. I get 8 weeks supply at a time from my GP - I don't want more than that as I use the '8 week' period to make sure I get to see my GP and my consultant on a regular basis so I can adkjust medication as appropriate, get appropriate tests to ensure my eye sight has not deteriorated, etc. Having a rare disease means that often the patient is more of an expert than the general practitioner! There is technically no maximum amount or minimum amount you can order from your GP. It depends on your relationship with your GP and your GPs relationship with your consultant!!!! GPs are often quite unprepared for, and lacking in knowledge of, rare diseases and Birdshot is a rare disease. So, they will often take advice from the consultant. I get 8 weeks supply at a time from my GP – I don’t want more than that as I use the ‘8 week’ period to make sure I get to see my GP and my consultant on a regular basis so I can adkjust medication as appropriate, get appropriate tests to ensure my eye sight has not deteriorated, etc. Having a rare disease means that often the patient is more of an expert than the general practitioner!

]]> By: nickb http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-100 nickb Sat, 20 Feb 2010 12:51:39 +0000 http://birdshot.org.uk/blog/?p=2486#comment-100 You might like to look at this story from the Telegraph (follow link) which seems to confirm a thriving trade in the export of meds from the UK which is leading to shortages. http://www.telegraph.co.uk/health/healthnews/7274646/One-in-10-pharmacies-illicitly-selling-NHS-drugs-abroad.html You might like to look at this story from the Telegraph (follow link) which seems to confirm a thriving trade in the export of meds from the UK which is leading to shortages. http://www.telegraph.co.uk/health/healthnews/7274646/One-in-10-pharmacies-illicitly-selling-NHS-drugs-abroad.html

]]> By: caroleball http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-84 caroleball Sun, 07 Feb 2010 17:58:26 +0000 http://birdshot.org.uk/blog/?p=2486#comment-84 I have most of my monthly blood tests done at my local hospital with the results going to my G.P, my consultant has written to him (I have a copy of the letter) telling him what tests I need and when I go to Moorfields I take a print out from my G.P. so that Moorfields know what my results are. I do have an annual Prepaid Prescription Card but My G.P has already told me the drug is expensive which makes me think it is a money issue not that I think he would admit to that. I have most of my monthly blood tests done at my local hospital with the results going to my G.P, my consultant has written to him (I have a copy of the letter) telling him what tests I need and when I go to Moorfields I take a print out from my G.P. so that Moorfields know what my results are. I do have an annual Prepaid Prescription Card but My G.P has already told me the drug is expensive which makes me think it is a money issue not that I think he would admit to that.

]]> By: Rea http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-83 Rea Sun, 07 Feb 2010 17:39:30 +0000 http://birdshot.org.uk/blog/?p=2486#comment-83 This is a difficult problem. It is quite true that the GP needs the results of the blood tests in order to ensure you can have your medication. I have my blood tests done by my GP. However, the GP is not knowledgeable on the medication you are taking - your specialist ophthalmologist or rheumatologist is the person in the know, and my consultant complains that the GP never sends him the results of the blood tests. And my GP is not good at interpreting the blood results, so I have to do this! We really do need protocols that work. Rea This is a difficult problem. It is quite true that the GP needs the results of the blood tests in order to ensure you can have your medication. I have my blood tests done by my GP. However, the GP is not knowledgeable on the medication you are taking – your specialist ophthalmologist or rheumatologist is the person in the know, and my consultant complains that the GP never sends him the results of the blood tests. And my GP is not good at interpreting the blood results, so I have to do this! We really do need protocols that work.

Rea

]]> By: David J Bethell http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-82 David J Bethell Sun, 07 Feb 2010 02:07:41 +0000 http://birdshot.org.uk/blog/?p=2486#comment-82 I know, from a conversation this week with my GP, that she is fully prepared to prescribe my drugs, but as I need regular blood tests due to the medication she has to be extremely careful. She informs me that Moorfields do not send her my blood test results, as she has often requested, so she is not willing to put herself in the position of prescribing me drugs. In truth she is protecting me and herself and I wouldn't have it any other way. We read every day of the most obvious mistakes happening within the NHS, so I'm happy that my GP is looking out for me. This is something I have to keep pushing with the hospital. Maybe this could be the reason others of you are having problems with your GPs. D x I know, from a conversation this week with my GP, that she is fully prepared to prescribe my drugs, but as I need regular blood tests due to the medication she has to be extremely careful. She informs me that Moorfields do not send her my blood test results, as she has often requested, so she is not willing to put herself in the position of prescribing me drugs. In truth she is protecting me and herself and I wouldn’t have it any other way. We read every day of the most obvious mistakes happening within the NHS, so I’m happy that my GP is looking out for me. This is something I have to keep pushing with the hospital.
Maybe this could be the reason others of you are having problems with your GPs.
D x

]]> By: Annie http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-77 Annie Tue, 02 Feb 2010 22:03:04 +0000 http://birdshot.org.uk/blog/?p=2486#comment-77 Carol, I do agree with you that the issue is all about whose budget it comes out of, and as you said you could do without that stress Do you have an annual prescription card. I find this is cheapest at £9 or so a month? Annie Carol, I do agree with you that the issue is all about whose budget it comes out of, and as you said you could do without that stress Do you have an annual prescription card. I find this is cheapest at £9 or so a month? Annie

]]> By: Carole Ball http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-76 Carole Ball Tue, 02 Feb 2010 21:43:36 +0000 http://birdshot.org.uk/blog/?p=2486#comment-76 My G.P. also says he is not specialised in prescribing this drug and thinks responsibility should be with my consultant even though she has written to my G.P. asking if he can give me prescriptions. I am more than sure it is all to do with money as i know it is expensive, I pay for my prescriptions and think this is unfair. My G.P. also says he is not specialised in prescribing this drug and thinks responsibility should be with my consultant even though she has written to my G.P. asking if he can give me prescriptions. I am more than sure it is all to do with money as i know it is expensive, I pay for my prescriptions and think this is unfair.

]]> By: Annie http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-74 Annie Mon, 01 Feb 2010 14:52:03 +0000 http://birdshot.org.uk/blog/?p=2486#comment-74 Chris, I have been told the problem is as Nick describes it. Nothing to do with american healthcare reforms more to do with the value of sterling and the value of the euro. Annie Chris, I have been told the problem is as Nick describes it. Nothing to do with american healthcare reforms more to do with the value of sterling and the value of the euro. Annie

]]> By: Chris http://birdshot.org.uk/blog/index.php/archives/2486/comment-page-1#comment-73 Chris Mon, 01 Feb 2010 14:42:07 +0000 http://birdshot.org.uk/blog/?p=2486#comment-73 This is really out of left field, but since President Obama is pushing for nationalized health care, I am wondering if you think that your system of health care has anything to do with the shortage of CellCept since it is so expensive? This is really out of left field, but since President Obama is pushing for nationalized health care, I am wondering if you think that your system of health care has anything to do with the shortage of CellCept since it is so expensive?

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