Lynne,
I deal with new chemical entities and how they may benefit asthma patients and sometimes have to review new drug administration papers that go to the FDA. Some of these will lead to technical presentations at asthma confrences. I know of some companies that have promised the earth and share prices have rocketed and then failed to deliver and it has brought the company to their knees and 10 years on they are struggling.
My personal feeling is that if I am asked to review a piece of work where I am recognised as being a specialist and can not get my head round it, how will someone like FDA who look at many drugs get their head round it? How will the lay person perceive the research being shown to them?
It is trying to get the data presented correctly so that it gives the truest representation in a form that technical and lay people can clearly undestand without ambiguity. I know where I work, to get a poster presentation released can take three months with all the hoops we have to go through to make sure we are presenting the correct information, there is no patent conflicts etc. I am also aske to reproduce peices of work to see if the company I work for can make use of the information. Today I have finished reading a paper that gives no information of how the data was generated or where it came from and what little information given appears to contradict itself later on!
There is no harm questioning what is put infront of us as hopefully the answers given should lead to a better understanding. Then that way grafts or new types of lenses will not be 'sold' to us as a cure, but as a managemnt startegy, ideally until such time that a gebuine cure is found.
Gareth
Corneal Transplantation - A Cure? a piece from my local pape
Moderators: Anne Klepacz, John Smith, Sweet
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Yup....
I hear and understand Gareth...
Actually.... what you are saying is the reason I left pure research years ago. There is far too much dissembling in order to generate grants and far too little top notch research that actually makes sense.
In my humble opinion..... if a piece of research cannot make itself clear to lay people .... then we are in trouble.
What I was trying to say is that many people are actually getting on quietly with research away from the glare of committees and so on... often they do not publish because of the restrictions and demands of legislative procedures. In this way, actually, the general public often lose out.
In my experience, much of which is given wide publicity in the news etc is not the best science..."politricks" as they say in Trini!
I agree totally with questioning what is put in front of you. I must admit I am getting somewhat restless with the NHS since returning from Trinidad. I have worked all my professional life within the NHS and believed in it. Yet, in my time in Trinidad.. I have seen that there is another way.
Although "public hospitals" are not that efficient and there is no "NHS strategy" patients get seen really fast through their private health system - which is in fact not that expensive.
I have experienced this as a patient (I was hospitalised for a month) as well as a practitioner. It appalls me that KC patients have to wait so long for lenses here (depending on their geographical location). However, I am now straying into politics...ahem!
Thank you for your views Gareth. I now know where you are coming from!
Lynn
I hear and understand Gareth...
Actually.... what you are saying is the reason I left pure research years ago. There is far too much dissembling in order to generate grants and far too little top notch research that actually makes sense.
In my humble opinion..... if a piece of research cannot make itself clear to lay people .... then we are in trouble.
What I was trying to say is that many people are actually getting on quietly with research away from the glare of committees and so on... often they do not publish because of the restrictions and demands of legislative procedures. In this way, actually, the general public often lose out.
In my experience, much of which is given wide publicity in the news etc is not the best science..."politricks" as they say in Trini!
I agree totally with questioning what is put in front of you. I must admit I am getting somewhat restless with the NHS since returning from Trinidad. I have worked all my professional life within the NHS and believed in it. Yet, in my time in Trinidad.. I have seen that there is another way.
Although "public hospitals" are not that efficient and there is no "NHS strategy" patients get seen really fast through their private health system - which is in fact not that expensive.
I have experienced this as a patient (I was hospitalised for a month) as well as a practitioner. It appalls me that KC patients have to wait so long for lenses here (depending on their geographical location). However, I am now straying into politics...ahem!
Thank you for your views Gareth. I now know where you are coming from!
Lynn
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Susan Mason
- Forum Stalwart
- Posts: 414
- Joined: Sat 24 Jan 2004 11:27 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Bolton Lancashire
Well ...... getting back to my original comments, I seem to have got lost somewhere along some of the additional posts.
Maybe I did not make my point clear enough? What I was trying to get as was how dangerous some of these news paper articles can be.
I am well aware of my own situation, I would not class my self as highly educated, I passed the usual exam at 16 with decent grade, especially as I didn't put much effort in. I started work at 16, moved to my current employer at just past 21 and have been with them since. At 37 this next birthday I have worked my way up the career ladder to my present position, got married and now have a family to provide for ( one little boy).
KC hit just after he was born and was a big shock. Initially it was probably badly diagnosed as I was advised of a 48 week wait at the hospital, seeing someone private reduced this however glasses were just re prescribed and life went on.
At 32 KC was diagnosed (5 years ago). Initially this was worrying however had little impact, then at 34 the bombshell hit, no more glasses and on to RGP's however these didn't work and after 7 month of blurred, little or no vision sclerals were fitted. Life started to get back to a bit of ok. I learnt to live with it, so did my family however I have to say it's been pretty rubbish a lot of the time. Wearing my lenses for work does not leave much time for socialising or helping with reading books and the like, the answer from the teachers "Well there's two of you isn't there?" yes there is but not if daddy is on nights or mummy is the only one in favour as so many times is the case.
Anyway I tried to keep all this in some sort of perspective, realising that it was quite possible I could be worse, others on the site seemed to be.
Then another rocky patch in April of last year, after 11 months of wearing the scleral one needed refitting. OK by me but I was made to feel that this was not ok by my employer and depression very quickly set in. Suddenly not being able to jump i the car and go somewhere nice with my little one started to really get me down and I know I am not alone in this.
Regular visits to the eye clinic from May onwards and then the other eye needed refitting, it was the week before Christmas before I had two lenses again.
The hospital have been very supportive, my consultant seems to really want to help, so as a last option last month I was looked at to see what they thought about surgery. They gave their offer and opinion and I gave mine. We both agreed under the present circumstances now was not the right time for me to agree to major surgery, whoknows things may settle down once I can get back to work - another situation.
However what doesn't help me at present is these newspaper articles with only half the info.
First the one in the daily paper some 6 weeks ago about the ring treatment. Kindly sent to me by my employer and suggested as an easy cure, why was I hesitating? and now the one in my local paper, which I can only asume was written to promote the eye unit???
Now my friends think 'oh if she just had the op she would be fine' 'She wouldn't have to be boring and stay in and be depressed, she has private health cover what is the problem?'
Well I am fed up with having to keep explaining to work and people around me why I can't see well at times and feel low sometimes and why I am different to someone with RP (retinous pigmentosa??) Some peoples ignorance really is the icing on the cake for me.
So here I am venting off, (SORRY). Having been up since 4:30 am to get the lenses in and be in Manchester for 9:30 am to try to solve the work issues.
And the most laughable thing about it? Well I know almost for certain that the press article must have been chopped down to suit as my sis who is a nurse knows this guy, he was her mentor a couple of years ago and has been qualified quite some time. So that just proves the article is written in a way that can easily be misunderstood, it suggests he qualified from Salford and started his job 4 weeks ago, I think what it should say is he moved to the eye retreval unit 4 weeks ago.
Anyway feeling a little better now, so for those of you who are still with me....... How do you find out if your hospital is any good and also how the consultant and surgeon is rated???
best wishes
Susan
Maybe I did not make my point clear enough? What I was trying to get as was how dangerous some of these news paper articles can be.
I am well aware of my own situation, I would not class my self as highly educated, I passed the usual exam at 16 with decent grade, especially as I didn't put much effort in. I started work at 16, moved to my current employer at just past 21 and have been with them since. At 37 this next birthday I have worked my way up the career ladder to my present position, got married and now have a family to provide for ( one little boy).
KC hit just after he was born and was a big shock. Initially it was probably badly diagnosed as I was advised of a 48 week wait at the hospital, seeing someone private reduced this however glasses were just re prescribed and life went on.
At 32 KC was diagnosed (5 years ago). Initially this was worrying however had little impact, then at 34 the bombshell hit, no more glasses and on to RGP's however these didn't work and after 7 month of blurred, little or no vision sclerals were fitted. Life started to get back to a bit of ok. I learnt to live with it, so did my family however I have to say it's been pretty rubbish a lot of the time. Wearing my lenses for work does not leave much time for socialising or helping with reading books and the like, the answer from the teachers "Well there's two of you isn't there?" yes there is but not if daddy is on nights or mummy is the only one in favour as so many times is the case.
Anyway I tried to keep all this in some sort of perspective, realising that it was quite possible I could be worse, others on the site seemed to be.
Then another rocky patch in April of last year, after 11 months of wearing the scleral one needed refitting. OK by me but I was made to feel that this was not ok by my employer and depression very quickly set in. Suddenly not being able to jump i the car and go somewhere nice with my little one started to really get me down and I know I am not alone in this.
Regular visits to the eye clinic from May onwards and then the other eye needed refitting, it was the week before Christmas before I had two lenses again.
The hospital have been very supportive, my consultant seems to really want to help, so as a last option last month I was looked at to see what they thought about surgery. They gave their offer and opinion and I gave mine. We both agreed under the present circumstances now was not the right time for me to agree to major surgery, whoknows things may settle down once I can get back to work - another situation.
However what doesn't help me at present is these newspaper articles with only half the info.
First the one in the daily paper some 6 weeks ago about the ring treatment. Kindly sent to me by my employer and suggested as an easy cure, why was I hesitating? and now the one in my local paper, which I can only asume was written to promote the eye unit???
Now my friends think 'oh if she just had the op she would be fine' 'She wouldn't have to be boring and stay in and be depressed, she has private health cover what is the problem?'
Well I am fed up with having to keep explaining to work and people around me why I can't see well at times and feel low sometimes and why I am different to someone with RP (retinous pigmentosa??) Some peoples ignorance really is the icing on the cake for me.
So here I am venting off, (SORRY). Having been up since 4:30 am to get the lenses in and be in Manchester for 9:30 am to try to solve the work issues.
And the most laughable thing about it? Well I know almost for certain that the press article must have been chopped down to suit as my sis who is a nurse knows this guy, he was her mentor a couple of years ago and has been qualified quite some time. So that just proves the article is written in a way that can easily be misunderstood, it suggests he qualified from Salford and started his job 4 weeks ago, I think what it should say is he moved to the eye retreval unit 4 weeks ago.
Anyway feeling a little better now, so for those of you who are still with me....... How do you find out if your hospital is any good and also how the consultant and surgeon is rated???
best wishes
Susan
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
Susan
Hello there, am new to the board and just wanted to say a little something.
Have had KC for 12 years now, am struggling with gas perm lens at the minute and awaiting scleral ones instead. Was told for the last nine to ten years that nothing could be daone for my left eye and that i should have surgery. I was on the list for about two years but then opted out when they told me they had found a donor, i just dont think it was the right time.
Now i have a new consultant and have been told that scleral lenses will work and can now read five lines in my left eye when told it was useless as i could only see a lightbox!!
I guess what i am trying to say is that i really believe that surgery however you put it is always the last option and it must be at the right time for you. If it doesnt feel right then please leave it for a little while. I havent looked into it much as i decided against it, but from what i know once you have had it done it cant be reversed!
As for finding out about drs and everything i really dont know. I just wanted to come here and say that i really do sympathise with where you are and that i hope you will get it sorted soon.
Nice to have 'met' you! Take care
Claire X
Have had KC for 12 years now, am struggling with gas perm lens at the minute and awaiting scleral ones instead. Was told for the last nine to ten years that nothing could be daone for my left eye and that i should have surgery. I was on the list for about two years but then opted out when they told me they had found a donor, i just dont think it was the right time.
Now i have a new consultant and have been told that scleral lenses will work and can now read five lines in my left eye when told it was useless as i could only see a lightbox!!
I guess what i am trying to say is that i really believe that surgery however you put it is always the last option and it must be at the right time for you. If it doesnt feel right then please leave it for a little while. I havent looked into it much as i decided against it, but from what i know once you have had it done it cant be reversed!
As for finding out about drs and everything i really dont know. I just wanted to come here and say that i really do sympathise with where you are and that i hope you will get it sorted soon.
Nice to have 'met' you! Take care
Claire X
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jayuk
- Ambassador
- Posts: 2148
- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Susan
Really difficult to find out about how good a hospital / consultant is................REALY REALY difficult.
You basically need to do research on the consultants there and the standard of the eye clinic...and thats a mission in itself.
When choosing an Opthamologist for my upcomign graft, I spent near enough 7 weeks...going through various channels to find the most respected and the ones that have performed the most transplants.......I think from my perspective its my vision thus I want the best man/woman to do my op......so I didnt care how long it took........but what yu will generally find now is that patient reference is the Best in my opinion. KC is such a condition that sadly many in the field do not really understand what we go through......thus when you do find a Optometrist / Opthamologist that DOES hold on to them!!
Really difficult to find out about how good a hospital / consultant is................REALY REALY difficult.
You basically need to do research on the consultants there and the standard of the eye clinic...and thats a mission in itself.
When choosing an Opthamologist for my upcomign graft, I spent near enough 7 weeks...going through various channels to find the most respected and the ones that have performed the most transplants.......I think from my perspective its my vision thus I want the best man/woman to do my op......so I didnt care how long it took........but what yu will generally find now is that patient reference is the Best in my opinion. KC is such a condition that sadly many in the field do not really understand what we go through......thus when you do find a Optometrist / Opthamologist that DOES hold on to them!!
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Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Your post was very well put....I think if you print this tread the people who don't seem to understand will have some more insight about the issues at hand....sometimes putting things down (by text) makes you feel a lot better as you have it all down in black and white (and it isn't going round and round in your head)
Yes I'm sorry the others hijacked your thread as well !!
Yes I'm sorry the others hijacked your thread as well !!
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Susan Mason
- Forum Stalwart
- Posts: 414
- Joined: Sat 24 Jan 2004 11:27 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Bolton Lancashire
Dear All
No need at all for anyone to be sorry EVERYONE is entitled to their opinion and free speech.
It just gets me after a while having to keep explaining to people I think should know better, especially since I have been through it all several times, why I sometimes struggle.
Anyway am trying my best to get back to normal so, thanks to all for your comments.
Susan
No need at all for anyone to be sorry EVERYONE is entitled to their opinion and free speech.
It just gets me after a while having to keep explaining to people I think should know better, especially since I have been through it all several times, why I sometimes struggle.
Anyway am trying my best to get back to normal so, thanks to all for your comments.
Susan
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