Hi,
"Make a difference, become a member of the Moorfields Foundation Trust"
Janet Manning posted a note late December regarding Moorfields becoming a foundation hospital. I think for all those patients who attend Moorfields or any of there clinics it's worth registering. (Apart from being a patient, I am not affiliated with the hospital in any way.)
I feel this is a fantastic opportunity to work with the Hospital to improve what are already 1st rate services.
You are eligible to join if " if you are a member of staff, you are or have been a patient or carer of a Moorfields patient, or you live in London, Bedfordshire, Hertfordshire or Essex," and can do so by e-mailing you interest to foundation@moorfields.nhs.uk
Further information regarding the process can be found here - http://www.moorfields.org.uk/AboutUs/NH ... tionTrusts
"What is an NHS Foundation Trust?
An NHS Foundation Trust is a new kind of hospital, free from direct control by the government, and accountable instead to its patients, local population and front-line staff. Moorfields has applied to be one of the first of this new kind of Trust, in April 2004.
By being set free from government control, and having greater powers and flexibility financially, it means that Moorfields will be able to shape our services to better reflect patient needs and priorities.
Will Foundation Trusts be part of the NHS?
As a Foundation Trust, Moorfields would remain very much part of the NHS, with the core principle of offering services according to need, not ability to pay.
There will be restrictions on the disposal of NHS assets and clear requirements as to what clinical services are to be provided. Foundation Trusts will not be able to sell off land and buildings used for essential clinical services.
Who will control the activities of the hospital?
Most importantly, public, patients and staff will be eligible to become members of the trust and stand for election on the Board of Governors, who will oversee the management of the trust and help form plans and developments. Other key partners in health and local government will also be represented on the Board of Governors.
An independent regulator, and an independent body, the Commission for Healthcare Audit and Inspection, will ensure that we work to the same high standards as other NHS hospitals and will safeguard the activities of the trust.
What will it mean for our patients?
If we become an NHS Foundation Trust, all patients will be eligible to become a member of the trust, giving them more power over the direction of services and facilities, as well as entitling them to certain rights, though members will not get preferential treatment.
How do I become a member?
Criteria for membership are undergoing consultation. However, if you are a member of staff, you are or have been a patient or carer of a Moorfields patient, or you live in London, Bedfordshire, Hertfordshire or Essex, you are likely to be eligible for membership"
Philip
Quicktopic posts: Jan 2004
Moderators: Anne Klepacz, John Smith, Sweet
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Guest
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sajeev
Thanks Jan for your reply,
I think that anything anyone can metion something to help us KC-er, is an added blessing when so much is against us. And as such any help with lens management is a god send for us as well.
When I get my lenses I think I may will try an ultrasonic cleaner. After doing some research I found a web-site which was very interesting to me called, http://www.nowmedic.com , there is a european website which i can not remember the name of.
As i understand, it works at a very high frequancy, more than most of the other ultrasonic cleaners. (which means it cleans better than just using your fingers)
One of the models uses just ordinary saline solution (which is cheaper) for cleaning (it takes 2 min) and steralization (it takes 5 min) at a touch of a button.
The size of the baskets my be a problem for larger lenses us KC-ers have to wear, Maybe it could be modified for us KC-ers (wishful thinking, I know !)
Also it has been tested by the japanease to see if it kills the germs found on contact lenes.
And also there is no problem with protein deposts, because the cleaner work at very high frequancy.
Please give me some feed back on this (good or Bad).
Thanks
Sajeev
Keep your head up!
I think that anything anyone can metion something to help us KC-er, is an added blessing when so much is against us. And as such any help with lens management is a god send for us as well.
When I get my lenses I think I may will try an ultrasonic cleaner. After doing some research I found a web-site which was very interesting to me called, http://www.nowmedic.com , there is a european website which i can not remember the name of.
As i understand, it works at a very high frequancy, more than most of the other ultrasonic cleaners. (which means it cleans better than just using your fingers)
One of the models uses just ordinary saline solution (which is cheaper) for cleaning (it takes 2 min) and steralization (it takes 5 min) at a touch of a button.
The size of the baskets my be a problem for larger lenses us KC-ers have to wear, Maybe it could be modified for us KC-ers (wishful thinking, I know !)
Also it has been tested by the japanease to see if it kills the germs found on contact lenes.
And also there is no problem with protein deposts, because the cleaner work at very high frequancy.
Please give me some feed back on this (good or Bad).
Thanks
Sajeev
Keep your head up!
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Dave in Wales
The bells should have rang long ago.
As some of you know I started posting here after I was told by my specialist that I was to have a cornea transplant. Well heres the story so far.
I went to see the specialist late last year. I sat in the consulting room with the ‘specialist’ nurse who asked me what was wrong. When I said I had Keratoconus she asked.
‘What is that and do you know where I can get any information about it from?’ (Bells should have rung here)
The other nurse then walked in and without me knowing anything said
‘Hello, are you looking forward to your operation?’
‘What operation?’ says I
‘You’re booked in for surgery on the 28th of January’ she says
‘Oh am I, thats nice to know. So what will happen?’
You’ll go in in the morning have the operation and be out by the afternoon’ she says
‘OK what about afterwards, when do the stitches etc come out, do I have to go back to the hospital?’
‘No she says, you come here a week later and we take them out here, nothing to worry about we take loads of stitches out here ‘
‘Ahh so it’s not that much of a serious operation then’
‘No we do loads of them here every week’
In walks the specialist and practically repeats what the nurse has just told me
I’d come in in the morning and be home by tea time, and there would be no problems, I would awake in the hospital and as long as I had someone at home I could go back home and come back in a week to see them and make sure all is ok. I would be given some eye drops to use and all would be fine.
Now, I’m not up on this operation and wasn’t really expecting this news but walked away thinking, ‘maybe they know what they are on about’
Then I posted here, and I am so glad I did. Last week I went to see the opticians because the wrong lenses had been sent to me so I need a new set making from blanks. I was talking to him about the problem and a few questions I had. He was very good and very willing to listen about what the ‘specialist’ had told me.
He then said ‘hold on, he told you you would be out the same day and have the stitches out next week ? Yes I said and this is what the nurse said as well. This raised his eyebrows as well.
After more discussion he said he thought the ‘specialist’ was going to do a cataract operation. The main point being that they DON’T do cornea transplants at my local hospital, and there is no way that I would be home straight after the operation. The stitches could be in my eye up to a year and I would be on some serious medication for a long time to fight rejection. He also asked if I had had any tissue typing or blood test, None of these had been done. He even had the bookelt from Morefeild Hospital with him and let me read that about the operation. Totoal different to what I had been told.
So we decided to stop the operation on ground of the specialist didn’t sound like he knew what he was doing.
So now I am waiting to see the ‘specialist’ again on the 22nd for what was supposed to be my ‘Pre Op’ meeting armed with a host of questions and anger at what I have been told.
Just as well I found this group or I would have been in a right mess. Many thanks to the people on here who told me the truth about what goes on, and stopped me walking into what could have been a life changing situation with dire consequences.
PS: I've posted this to my forums as well incase anyone wants to add anything to it
Thanks for all your help
Dave
http://www.davessite.co.uk
As some of you know I started posting here after I was told by my specialist that I was to have a cornea transplant. Well heres the story so far.
I went to see the specialist late last year. I sat in the consulting room with the ‘specialist’ nurse who asked me what was wrong. When I said I had Keratoconus she asked.
‘What is that and do you know where I can get any information about it from?’ (Bells should have rung here)
The other nurse then walked in and without me knowing anything said
‘Hello, are you looking forward to your operation?’
‘What operation?’ says I
‘You’re booked in for surgery on the 28th of January’ she says
‘Oh am I, thats nice to know. So what will happen?’
You’ll go in in the morning have the operation and be out by the afternoon’ she says
‘OK what about afterwards, when do the stitches etc come out, do I have to go back to the hospital?’
‘No she says, you come here a week later and we take them out here, nothing to worry about we take loads of stitches out here ‘
‘Ahh so it’s not that much of a serious operation then’
‘No we do loads of them here every week’
In walks the specialist and practically repeats what the nurse has just told me
I’d come in in the morning and be home by tea time, and there would be no problems, I would awake in the hospital and as long as I had someone at home I could go back home and come back in a week to see them and make sure all is ok. I would be given some eye drops to use and all would be fine.
Now, I’m not up on this operation and wasn’t really expecting this news but walked away thinking, ‘maybe they know what they are on about’
Then I posted here, and I am so glad I did. Last week I went to see the opticians because the wrong lenses had been sent to me so I need a new set making from blanks. I was talking to him about the problem and a few questions I had. He was very good and very willing to listen about what the ‘specialist’ had told me.
He then said ‘hold on, he told you you would be out the same day and have the stitches out next week ? Yes I said and this is what the nurse said as well. This raised his eyebrows as well.
After more discussion he said he thought the ‘specialist’ was going to do a cataract operation. The main point being that they DON’T do cornea transplants at my local hospital, and there is no way that I would be home straight after the operation. The stitches could be in my eye up to a year and I would be on some serious medication for a long time to fight rejection. He also asked if I had had any tissue typing or blood test, None of these had been done. He even had the bookelt from Morefeild Hospital with him and let me read that about the operation. Totoal different to what I had been told.
So we decided to stop the operation on ground of the specialist didn’t sound like he knew what he was doing.
So now I am waiting to see the ‘specialist’ again on the 22nd for what was supposed to be my ‘Pre Op’ meeting armed with a host of questions and anger at what I have been told.
Just as well I found this group or I would have been in a right mess. Many thanks to the people on here who told me the truth about what goes on, and stopped me walking into what could have been a life changing situation with dire consequences.
PS: I've posted this to my forums as well incase anyone wants to add anything to it
Thanks for all your help
Dave
http://www.davessite.co.uk
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Jay76
Dave
I can understand your concerns here!!! Its a joke isnt it sometimes with what we are faced with!
I had something f that nature when I was first seen at a local opticians; the Optomotrist than proceeded to tell me that my condition is very rare and eventually my cornea will fall off!....and this is from a wel knon high street opticians!
Makes you wonder!!
I can understand your concerns here!!! Its a joke isnt it sometimes with what we are faced with!
I had something f that nature when I was first seen at a local opticians; the Optomotrist than proceeded to tell me that my condition is very rare and eventually my cornea will fall off!....and this is from a wel knon high street opticians!
Makes you wonder!!
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Philip - London
Dave, Jay,
I must admit there is something to be said for not always trusting what a medical professional says, being informed and asking questions.
About four years ago I had my first corneal ulcer, I went to a private 24hr medical centre and the doctor didn't know what it was but pulled out a hypodermic syringe! He was going to poke it and try to 'dislodge' it!!
Rightly I told him not to and went to queue up at an NHS A&E.
Philip.
I must admit there is something to be said for not always trusting what a medical professional says, being informed and asking questions.
About four years ago I had my first corneal ulcer, I went to a private 24hr medical centre and the doctor didn't know what it was but pulled out a hypodermic syringe! He was going to poke it and try to 'dislodge' it!!
Rightly I told him not to and went to queue up at an NHS A&E.
Philip.
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jay76
Philip
Jeez now thats a worse one! Hate to even think what COULD have happened if you had your trust in him!!! and he went ahead!!
I guess in all honesty we cant out right blame them; its the way the medical community wrk; its passed down knowledge and text book education. I guess thats how they become knowledgeable in the feed; however as times are now chaning fast and with the introduction of the Internet age we are seeing more and more patients have more knowledge than the people we are seen by.
Oh well!!
Jeez now thats a worse one! Hate to even think what COULD have happened if you had your trust in him!!! and he went ahead!!
I guess in all honesty we cant out right blame them; its the way the medical community wrk; its passed down knowledge and text book education. I guess thats how they become knowledgeable in the feed; however as times are now chaning fast and with the introduction of the Internet age we are seeing more and more patients have more knowledge than the people we are seen by.
Oh well!!
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Paul Bines
First of all, if I rubbed anyone up the wrong way with the tone of my post, sorry! I was in an irritated frame of mind when I posted!
Obviously, Sclerals can be the ideal solution for many, and I would not want anyone to think that I am against them, but as someone else posted in response to me, different things work for different people, and we shouldn't (to use a colloquialism!) 'diss' grafts automatically! I hinted that I am unsuitable for Sclerals - this was discovered at Moorfields some years ago - it is quite possible that developments in the technology mean I would now have fewer problems with them, but the option was not offered at Southend - mainly, I suspect, because I was adamant that I could not cope with contact lenses of any sort. (I find them seriously uncomfortable!)
I have, so far, had three grafts two on my left (one at Moorfields, and the regraft at Southend following corneal ulcers - not, as far as I'm aware, a rejection episode) and one on my right - apart from the ulcers, I have had few if any problems, and can see acceptably with glasses (in fact, my eyesight is the best it's been since I was originally diagnosed with KC by a particularly observant Optician at Dolland & Achison!). I realise that grafts are not for everyone, and some consider them a 'last resort', but they are, for some, a good long-ish term remedy for KC - just as Sclerals are for others!
All I was (in a bad tempered tone, I admit) asking for in my earlier post was that we have a little more balance in the posts - it seems (though I've not counted and so am ready to stand corrected!) that pro-scleral posts outnumber pro-graft posts greatly.
I'm grateful to everyone who posts - even if, sometimes, the posts lead to heated discussions that really just go in circles!
Au Res.,
Paul
http://www.efbenson.co.uk/
http://www.paulbines.co.uk
http://www.convergent-diversity.co.uk/
Obviously, Sclerals can be the ideal solution for many, and I would not want anyone to think that I am against them, but as someone else posted in response to me, different things work for different people, and we shouldn't (to use a colloquialism!) 'diss' grafts automatically! I hinted that I am unsuitable for Sclerals - this was discovered at Moorfields some years ago - it is quite possible that developments in the technology mean I would now have fewer problems with them, but the option was not offered at Southend - mainly, I suspect, because I was adamant that I could not cope with contact lenses of any sort. (I find them seriously uncomfortable!)
I have, so far, had three grafts two on my left (one at Moorfields, and the regraft at Southend following corneal ulcers - not, as far as I'm aware, a rejection episode) and one on my right - apart from the ulcers, I have had few if any problems, and can see acceptably with glasses (in fact, my eyesight is the best it's been since I was originally diagnosed with KC by a particularly observant Optician at Dolland & Achison!). I realise that grafts are not for everyone, and some consider them a 'last resort', but they are, for some, a good long-ish term remedy for KC - just as Sclerals are for others!
All I was (in a bad tempered tone, I admit) asking for in my earlier post was that we have a little more balance in the posts - it seems (though I've not counted and so am ready to stand corrected!) that pro-scleral posts outnumber pro-graft posts greatly.
I'm grateful to everyone who posts - even if, sometimes, the posts lead to heated discussions that really just go in circles!
Au Res.,
Paul
http://www.efbenson.co.uk/
http://www.paulbines.co.uk
http://www.convergent-diversity.co.uk/
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KateF
Aimee -
My son had his sclerals fitted by judge-the-size then try one out of the trial selection kit... - he has learning difficulties and wouldnt have tolerated anythng where youhave to stay still! Successful fit too!
The right and left eyes are different (almost symmetrical)as the centre of the cone is nearer to the nose than the outer eye edge, and they may be diffrent sizes, shapes, strengths.
I believe others can use this method for straightforward eye shapes, but most are fitted by taking a mould, particularly if the eye shape is more unusual or distorted.
Phillip-
thanks for advice re aspartame ie sugar substitute in drinks being risky for eye function., which i will take on board straight away. thankyou.
Matt -
hoping you get responses to the question Whats the progression in KC? I think the range of difficulty and success should be aired, as we were VERY scared by not knowing, at the beginning. We had an alarming start as the first other KC person i was ever in contact with was, at age 42, blind to all but shadows. Also some hospital advice i had (wrong) was that if my son rubbed his eyes the front would rupture...
Since then i have heard from and about HUNDREDS of KC people, only two of whom dont have useful vision, one of these because of additional retinal problems. None have the front or middle of their eye missing!!
My understanding (IMPERFECT I MUST ADD) is that rapid deterioration, IF it happens, tends to be age 15 - 25 ( a bit earlier in Down's) and anything after that tends to be gradual if at all.
Plus everyone's eyes KC or not seem to be blooming hopeless from age 45!!
Hydrops, the rupture of inner corneal membrane allowing a sudden bulge of fluid across the front of the eye, is usually limited to once (if at all) per eye, and tends to happen when things are changing rapidly, but lots of folk never experience it and i have heard of those who more rarely have had 2 or 3 episodes in one eye.
The degree of useful vision ive read of covers the WHOLE range from slight problem = glasses, to extremely strong lenses giving imperfect correction, so that doesnt help much!
My son at age 18 measures 2/20 vision unaided, 3/20 with glasses, about 12/20 with scerals, some vague scarring from hydrops in both eyes not causing much further limitation. I have been told at various places that this represents an unusually severe case, but fairly typical for those Downs people who have KC (his vision wasnt good before!) Happy and functional at 12/20 though so not worried any more.
kate n dale
My son had his sclerals fitted by judge-the-size then try one out of the trial selection kit... - he has learning difficulties and wouldnt have tolerated anythng where youhave to stay still! Successful fit too!
The right and left eyes are different (almost symmetrical)as the centre of the cone is nearer to the nose than the outer eye edge, and they may be diffrent sizes, shapes, strengths.
I believe others can use this method for straightforward eye shapes, but most are fitted by taking a mould, particularly if the eye shape is more unusual or distorted.
Phillip-
thanks for advice re aspartame ie sugar substitute in drinks being risky for eye function., which i will take on board straight away. thankyou.
Matt -
hoping you get responses to the question Whats the progression in KC? I think the range of difficulty and success should be aired, as we were VERY scared by not knowing, at the beginning. We had an alarming start as the first other KC person i was ever in contact with was, at age 42, blind to all but shadows. Also some hospital advice i had (wrong) was that if my son rubbed his eyes the front would rupture...
Since then i have heard from and about HUNDREDS of KC people, only two of whom dont have useful vision, one of these because of additional retinal problems. None have the front or middle of their eye missing!!
My understanding (IMPERFECT I MUST ADD) is that rapid deterioration, IF it happens, tends to be age 15 - 25 ( a bit earlier in Down's) and anything after that tends to be gradual if at all.
Plus everyone's eyes KC or not seem to be blooming hopeless from age 45!!
Hydrops, the rupture of inner corneal membrane allowing a sudden bulge of fluid across the front of the eye, is usually limited to once (if at all) per eye, and tends to happen when things are changing rapidly, but lots of folk never experience it and i have heard of those who more rarely have had 2 or 3 episodes in one eye.
The degree of useful vision ive read of covers the WHOLE range from slight problem = glasses, to extremely strong lenses giving imperfect correction, so that doesnt help much!
My son at age 18 measures 2/20 vision unaided, 3/20 with glasses, about 12/20 with scerals, some vague scarring from hydrops in both eyes not causing much further limitation. I have been told at various places that this represents an unusually severe case, but fairly typical for those Downs people who have KC (his vision wasnt good before!) Happy and functional at 12/20 though so not worried any more.
kate n dale
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umbilica@umbilical.demon.
Paul wrote:
All I was (in a bad tempered tone, I admit) asking for in my
earlier post was that we have a little more balance in the posts - it seems (though I've not counted and so am ready to stand
corrected!) that pro-scleral posts outnumber pro-graft posts
greatly.
I think you're right that there does tend to be a line of "try
anything to avoid a graft if you can, in particular try
sclerals" - if not in numbers, one might get the feeling.
Now, technically speaking, that may be a sensible strategy - and I wouldn't want to argue with anything Ken said (and great to
read you posting here Ken; how are you?).
But I think we ought to think also of the people who are posting here, maybe for the first time, in a state of great anxiety when they are lined up for grafts, for one reason or another. For
some, maybe advice to change the plan and try sclerals first
might be both welcome and useful info.
But for those for whom a transplant is the right, or the only,
option, and are seeking reassurance at a daunting time, maybe we could be more supportive??
I haven't had a graft .... yet?? .... but certainly don't relish the prospect of having a piece of me chopped out for ever after
and a strange replacement sewn in to do its best. Maybe one day this will be the best option, technically - but since when did
that sort of rationality negate one's gut feeling?
SO - to everyone who's going to have a graft - hang in there,
and good luck!
Which reminds me - has anyone heard from Harpo recently?
Rosemary
--
Rosemary F. Johnson
All I was (in a bad tempered tone, I admit) asking for in my
earlier post was that we have a little more balance in the posts - it seems (though I've not counted and so am ready to stand
corrected!) that pro-scleral posts outnumber pro-graft posts
greatly.
I think you're right that there does tend to be a line of "try
anything to avoid a graft if you can, in particular try
sclerals" - if not in numbers, one might get the feeling.
Now, technically speaking, that may be a sensible strategy - and I wouldn't want to argue with anything Ken said (and great to
read you posting here Ken; how are you?).
But I think we ought to think also of the people who are posting here, maybe for the first time, in a state of great anxiety when they are lined up for grafts, for one reason or another. For
some, maybe advice to change the plan and try sclerals first
might be both welcome and useful info.
But for those for whom a transplant is the right, or the only,
option, and are seeking reassurance at a daunting time, maybe we could be more supportive??
I haven't had a graft .... yet?? .... but certainly don't relish the prospect of having a piece of me chopped out for ever after
and a strange replacement sewn in to do its best. Maybe one day this will be the best option, technically - but since when did
that sort of rationality negate one's gut feeling?
SO - to everyone who's going to have a graft - hang in there,
and good luck!
Which reminds me - has anyone heard from Harpo recently?
Rosemary
--
Rosemary F. Johnson
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