Newsletter no.10 March 2004
| IContents
· Introduction · News - Public meetings, local groups, address exchange, RNIB exhibittion, uveitis specialist lists, · Report of Public meeting November 2004 · ‘A patient’s view, some useful suggestions
|
This
newsletter contains an account of the first public meeting held by the UIG. The
meeting went very well and there was a feeling that these meetings would be
welcomed in the future, preferably on an annual basis. More meetings are planned
for Aberdeen and Bristol later this year. Please get in touch with us if you
think you may be interested in either of these.
Public Meetings
Following
the success of the meeting at Moorfields, further meetings are planned around
the UK. Meetings at Aberdeen and
Bristol are planned with Professor John Forrester and Professor Andrew Dick
agreeing to attend and speak at these meetings.
Suggestions for other venues will, of course, be very welcome.
Local Groups
Some of our members have expressed an interest in
setting up local groups. This will be a great way to take the UIG forward.
Hopefully
this will result in local meetings and having local phone support etc. One of
the other advantages is that the eye clinics in one area can be ‘targeted’
to assist in making patient information available.
Jenny
Staples is keen to set up a local group in the South West of England. If you are
interested, you can contact Jenny on 0117 9328054 and at jennystaples@onetel.net.uk.
Address Exchange
The main address exchange will no longer be added to and
distributed because it is getting too big. It seems far better to develop local
contacts and groups to allow people to keep in touch with each other. Hopefully
the address exchange has done a good job putting people in touch so far.
The
“junior” address exchange (for families with kids with uveitis) and the
Nurses address exchange will continue and if anyone wishes to join these small
groups to swap information and experiences then please get in touch with the
UIG.
RNIB Vision 2004 Exhibition Returns
to Kensington and Chelsea
The
Royal National Institute of the Blind (RNIB) is pleased to announce that Vision,
its international Education and Employment exhibition, is returning to
the Royal Borough.
Vision
2004 will take place on 6 April at Kensington Town Hall.
The event, which is now in its twelfth year, is built around education
and employment issues for people with sight problems, their families, carers and
the professionals working with them.
List of Uveitis Specialists
One of the most frequently asked questions from
people contacting the UIG, is for information about the whereabouts of uveitis
specialists. Many people express surprise that there is no official source of
this information. Indeed, although there are a few lists to be found, none of
them are definitive and all are very incomplete. This is not just a problem in
the UK as many requests for contacts for uveitis specialists are received from
the US, Australia and Europe and anywhere in between.
This is a difficult subject for a support group to
be involved in but one that it needs to be involved with because it is obviously
a subject that crops up the whole time.
The UIG is working with recognised uveitis
specialists and are also collecting lists that already exist (some of which can
be out of date or inaccurate). If a list is to be published by the UIG, it would
only be of value if it were as complete and as accurate as possible. Such a list
will hopefully be published this year.
In the meantime, please feel free to contact the
UIG, for advice on the business of finding uveitis specialists. There is a good
deal of advice that can be given on a one to one basis.
The UIG obviously is keen to hear any comments on
this subject.
| Agenda: | |
| 1.Introduction to the UIG, its aims and possible future aims. | Mr. Phil Hibbert |
| 2.Current treatment and what looks promising! | Professor Susan
Lightman, Moorfields Eye
Hospital |
| 3.Communication between Doctor and patient | Discussion |
| 4 Question and Answer session | Professor S Lightman |
| 5 Matters arising from the Q&A session and conclusions. | Discussion |
1.
Introduction
Just over 40 attended the first meeting ever held by the Uveitis Information Group.
Phil Hibbert welcomed everyone who had come along to the meeting, some traveling long distances. He then welcomed Professor Susan Lightman, of Moorfields, who had kindly agreed to give a talk on current treatments of uveitis and to hold a question and answer session.
Phil briefly explained how the UIG had been formed as a result of an observation by Andrew Dick and Professor John Forrester, the Uveitis specialists at Aberdeen Royal Infirmary Eye Clinic. They had recognised that there was a real lack of information and support for people affected by uveitis. The group was then formed, with the first aim being to produce good quality and easily understood information. This remains the main aim of the UIG. Phil reiterated the roles of the group which are:
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to provide support for uveitis sufferers, their families and all those with an interest in uveitis, including other organizations, and medical and nursing staff.
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To promote good communication and cooperation with the medical profession.
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To encourage those concerned with uveitis to exchange information and support each other.
2. Current treatment and what looks promising! Prof. Sue Lightman
Phil introduced Prof. Susan Lightman to speak on the treatment of uveitis and any promising areas of research and treatment, which may lead to better treatments in the future.
There followed a very clear explanation of what uveitis is,
how it is classified and what some of the terminology meant. This was
interspersed with reports of the most up to date approach to treatment and some
promising areas of research for the future. Professor Lightman welcomed
questions during this part of the afternoon and the main points are summarised
below:
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One statistic which demonstrated the significance of uveitis. 10% of people registered for blind or partial sight, and who are under 65, are registered due to uveitis. This compares with 11% for diabetic retinopathy and diabetes is a much more common condition. This shows that uveitis is one of the most significant eye conditions of the young and working population.
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Steroids are the mainstay of treatment of nearly all types of uveitis.
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Immunosuppressant drugs, mainly cyclosporin, are used when steroid dose can not be reduced sufficiently without re-activating the inflammation. Other drugs such as mycophenolatae mofetil (cellcept), tacrolimus, methotrexate amongst others may also be used in certain cases.
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Treatment of cystoid macula oedema (CMO) was described as a very significant problem in patients with uveitis. (mainly posterior uveitis, but also sometimes in anterior uveitis). It is one of the more common sight threatening complications. Professor Lightman described how a lot more can be done to reduce and treat CMO, than was once thought. Aggressive treatment with steroids and sometimes the other immunosuppressant drugs like cyclosporin are now used to control CMO. There may also be a role in the future for the use of intra ocular injection of triamcinolone acetonide.(also known as kenalog).This is a corticosteroid, used by injection. The major difference here is the inside of the eye (intra) is injected, instead of the more familiar peri-orbital injection which deposits the steroid behind but outside the surface the eye.
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Triamcinolone injected into the eye instead of around is also beginning to show potential benefit in providing cover for cataract operations in uveitis patients. The current method is to provide steroid ‘cover’ before and after the cataract removal is for oral or intra venous steroids to be given.
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There has been an attempt to develop drugs which can influence the natural history of the disease. What is meant by this is that instead of the drugs just countering the effects of the uveitis, these newer drugs interfere with the processes that occur in producing the disease. It is the hope that such drugs may in the future, put the condition into remission when the drug is withdrawn. Interferon A and anti-TNF have shown promise in this area.
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It will be important to develop ways to identify the patients which will benefit most from the newer immunosuppressant drugs, which are used aggressively to treat severe inflammation. These new drugs are powerful with potentially significant side effects. However when with good case selection they can be very successful in controlling severe uveitis. These drugs are also inevitably very expensive.
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Funding is very much an issue in the treatment of uveitis, particularly as more of the newer drugs are introduced. Uveitis is rather a “Cinderalla” condition, attracting little interest from the big drug companies and those funding medical research. As such, most of the newer drugs are not licensed to treat uveitis and this causes the eye clinics major problems with funding for these treatments.
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Sirolimus (Rapamune) is one of the newer drugs being looked at for treatment in uveitis and one major advantage of this drug is its relatively low cost.
3. Communication between Doctor and patient Discussion
Phil Hibbert
explained that this topic was included on the agenda simply because of the
regularity it comes up as a subject in letters, emails and phone calls.
The reasons good why communication was important was
summarised. Patients are likely to feel
more confident, and less worried about their condition. The ‘fear of the
unknown’ is always reduced with information, and the knowledge that questions
will be answered clearly.
From
the doctor’s point of view, reaching a diagnosis and deciding on different
treatment options is always going to be easier if patients are able to describe
their relevant symptoms and concerns.
It is clear that this two way process can have its difficulties, given time restraints and the terminology involved etc.
A good discussion followed and many examples of either problems or possible solutions were aired.
This topic has been covered in a previous newsletter (newsletter no. 5) and will again feature in the next.
4. Question and Answer Session. With
Professor Lightman.
This proved to be very lively and there was no shortage of questions for Professor Lightman who skillfully answered all of them, avoiding the detail of individual cases and using the questions to raise some important points.
1.With regard to uveitis what do the terms remission and burn out mean?
Remission is the “quiet” time
(no inflammation) between relapses. ‘Burn
out’ is the term used when the condition finally goes away. This may happen
with age, but can take a long time.
2. When the inflammation is gone, my eyes are still sensitive to light. Why is this?
Following an episode of anterior uveitis, the eye may remain photophobic for a while, even in the absence of inflammation. There is nothing to be done to prevent this. It is important to distinguish this from the early stages of a cataract forming and it is always important to confirm that no inflammation is present.
3. Can you have both acute and chronic uveitis?
Yes, an acute case may become chronic, and someone with chronic uveitis may have acute episodes.
4. What precautions should be taken for traveling abroad?
When traveling abroad, it is a good idea to have a word with your specialist, to arrange to take a course of treatment away with you. If affected away, self treatment, followed by seeking medical advice as soon as practicable is likely to be better than no treatment at all.
5. What is the role of complementary medicine/nutrition in uveitis?
There is no evidence to suggest there are any benefits in any complimentary / alternative therapies. However, with any condition and particularly a chronic condition, achieving good general health and ‘feeling better’ or ‘well’ can improve the situation enormously. Anything that is found to make things better is a good thing.
6. What is the structure for seeking referrals to uveitis clinics in the UK?
The structure is straightforward. A GP refers a patient to an Ophthalmologist. The Ophthalmologist then decides if an onward referral to a specialist in uveitis is required if uveitis is not a specialty in their own clinic.
7. What happens if I get a cataract and have uveitis?
Cataract is one of the main complications of uveitis. A cataract can still be treated and removed but it is must be dealt with more carefully in the patient with uveitis. There is a risk of reactivation of the uveitis or of cystoid macula oedema (CMO). Firstly, there must have no inflammation in the past 3 months. A ‘cover’ of systemic steroid treatment (tablets and/or intravenous steroids may be used), before and after the cataract removal is necessary. In the future the use of intra ocular triamcinolone may be useful.
5. Matters arising from the Q&A session and conclusions.
There was a good deal of discussion arising from this session.
One of the main topics was still the availability of uveitis specialists and the means by which referrals are made onwards to uveitis specialists. The actual process is simple enough as seen above. It just happens that it is not always seen by many to work efficiently. It is clear that not all cases of uveitis need be seen by one of the few dedicated uveitis clinics. However it is important that the channel of onward referral to uveitis clinics is open and used by all eye clinics for those cases that require it. The patient should not be expected to determine what is an appropriate referral but many feel they are in this position. There is also a natural desire in many patients to find out and seek the best centre for treatment for any given condition.
The question of private referrals was raised. This remains a possibility for many of the uveitis specialists. In this case, a GP can assist in this process, or the clinic could be approached directly. The aim of this type of referral would normally be to seek an opinion and then be taken on as a patient, referred onwards or back to the patient's nearest clinic.
There is not a definitive list of uveitis specialists and few lists that can be found can be rather inaccurate.
It is an aim of the UIG to produce a list of specialists which is as useful for all concerned as possible. It is felt that this will only occur with the cooperation and help of uveitis specialists themselves and this is being worked towards.
Phil Hibbert is happy to be contacted for advice on all aspects of uveitis specialists and how to deal with any concerns about finding one or asking for referrals on info@uveitis.net or on 01806 577310 (UK).
More will appear in future when progress on a reasonably definitive list of specialists is put together.
There was no shortage of
questions and discussion points and the meeting could have easily run well over
its allotted time.
It was decided that holding public meetings such as these was popular and very useful and it was agreed to hold regular annual meetings in London, hopefully based at Moorfields. The addition of having more time for socializing and discussion after the meeting would improve things.
The other matter which was discussed was the format of the address exchange. (see in News, above).
With any visual problem, the computer’s versatility can be a huge aid in accessing information and performing tasks that may be more difficult using printed material.
Looking at a computer screen for any amount of time will have no influence on uveitis. Uveitis will not be caused or triggered by looking at a screen. What is more relevant is that if you have partial sight or if your eyes are sensitive to light or glare, then the eyes will ‘get ‘tired’ more quickly and suffer eyestrain more easily. It is worth getting the screen set up in the best way and in the best place to minimize these potential problems. The simplest things are often the most effective:
- Make sure there are no lights or windows directly behind you shining onto the screen.
- Make sure there are no lights or windows causing bright light to shine into your eyes. Experiment with the position of screens / desks if possible, - it is amazing what a difference some simple changes can make.
- Make a conscious effort to blink a lot until it becomes second nature. It has been shown that when looking at a screen, our ‘blink rate’ can dramatically reduce leading to dry eyes.
- Take regular breaks allowing the eyes to ‘relax’ by looking at things far away.
- Move the screen right to the front of the desk so that you are really close to it. (will work well with central vision loss but not for everybody)
- Make use of angle poise type desk lights as much as possible.
- Use the accessibility features of Windows (in My Computer) to set the most suitable text / icon size. Set the screen resolution to 800 x600 rather than 1024 768 to effectively enlarge items on the screen.
- Type text at a large font so that the eyes can “relax” looking at the screen and then resize it when you want to print it or email it.
A lot of this can be done by playing around with the ‘display’ or ‘accessibilities’ options in the Control Panel of Windows. The right solution will vary a lot depending on what sort of vision problem exists. If anyone would like some advice on this or has any good tips then please just contact us.
There is some help available on this website if you follow this , computer use link.
Another good source of computer help is on the 'Microsoft / enable' website. It is good for covering the various settings in different versions of Windows.
Here are some good suggestions or comments that have been sent in to be shared. Please send in (phone email or letter), any useful suggestions you have found that make a difference to dealing with uveitis.
- keeping notebooks for drops. By writing up the drops needed and ticking them off as they are taken, the nuisance value of this activity can be kept to a minimum
- warm compresses have been suggested by several people as a way to relieve the symptoms of anterior uveitis, pain, sensitivity etc. It is a method suggested and used at one or two eye hospitals. This simply involves using a small towel and hot/warm water and holding against the closed eye for approx. 10miins. (length of time is not too important, whatever works best).
- “Bright eyes” is an eye drop that has been featured in the press recently. It is supposed to ‘slow down’ the formation of cataract. An internet search on this subject unfortunately results in many references to rabbits, as fans of Watership Down will appreciate. Does anyone have any experience or information on this?