UK Keratoconus Self Help and Support Association
The Group AGM was held at Moorfields on 16th March 2002
20 people attended the AGM.
Following reports upon the year's events and presentation of 2000/2001 accounts committee elections were dealt with.
Unfortunately the scheduled guest speakers could not attend, Ken Pullum stepped into the breach with a talk and slides, He also took an active part in the general discussion.
Group representatives had met Dan Ehrlich and Dr. Moodaley along with the newly formed Patients Advisory Liaison Service [PALS] during that week. Our group was the first patient group to have met with PALS at Moorfields. There were helpful discussions about clinic procedures, patient concerns and other issues. As a result we have had direct input into the revised patient information leaflet. Other issues included possible annual patient reviews and the Nurse Helpline. Further meetings are planned so watch this space.
At a short committee meeting before the AGM publication of the
conference booklet was finalised. This will be despatched free of charge to all on the Group mailing list and otherwise at a cost of £5 each.
Funding was also agreed to secure our web name and further develop the web site discussion group.
Three new members have joined the committee since the last AGM making a new total of 11.
After the formal business a general adiscussion took place.
It was suggested that closer monitoring of web discussion group was needed and that the introduction of registration system would be of value. Repetition of similar queries and problems was raised and It was agreed that I will monitor this, It was suggested that it would be of value to file points raised under separate headings for ease of reference.
A summary report from Anne about the nature of telephone calls
and queries she has received. This is a helpful indicator of people's concerns
and ties in with the web discussion queries. Further booklets dealing with
particular areas of concern are being actively considered.
More news when I have it.
One frequently raised suggestion was the creation of a list of consultants, optometrists etc. This was discussed. As a Group it would be difficult for us to do, in view of the potential liability, which may follow. (If a recommendation was relied on and things went wrong.) It was agreed that this was an issue to be kept under review.
The KC Genetics Research team is seeking authority from the ethics committee to ask for volunteers to assist in research. This procedure is moving slowly. The results of any research may be a long way off even many years before results are known.
I am in touch with the research co-ordinator so please e mail me for any further details.
Phil Davis reported a request to supply Group T shirts to an Australian KC group. This is underway. A link to their website is also anticipated.
Any queries arising from this report of the AGM please e mail me.
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Page last updated: 19 February, 2015