Liverpool meeting

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Liverpool meeting

Postby space_cadet » Sun 06 Apr 2014 3:05 pm

did this go ahead? did anyone attend? any outcomes?
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Anne Klepacz
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Re: Liverpool meeting

Postby Anne Klepacz » Sun 06 Apr 2014 4:30 pm

Yes, it did go ahead and around 15 people attended - a mixture of existing members (some of whom had been to the Manchester conference) and new people who had seen the meeting advertised in the hospital. For many people there it was the first time they had met other people with KC. There were also excellent talks about KC and about crosslinking at St Paul's from one of the consultants and from the corneal nurse. I hope there will be more meetings in Liverpool in the future.
Anne

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Re: Liverpool meeting

Postby Steven Williams » Mon 07 Apr 2014 12:40 pm

http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=15621

I dont know how many KCers attend NHS Liverpool Lea but sadly it was a very poor turn out in view of the fact that the meeting was for the north west.

There may have been 15 people in the room including the two representatives from St Pauls Hospital and our charity's one committee member, Anne, and of those remaining some were partners/family members/friends of KCers. I would estimate of those present 7-8 had KC including myself.

The Manchester meetings I attended were better supported/attended.

I made a suggestion at the meeting that for future proposed quarterly NW Group KC meetings at Liverpool the other NHS eye hospitals in the north west be notified well in advance of any meetings and be provided with posters at the hospitals for display of such meetings.
"The mind is like a parachute it only operates when open"

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Re: Liverpool meeting

Postby space_cadet » Mon 07 Apr 2014 7:43 pm

surely to attract more potential attendees as Anne holds a database of the membership a letter or email if emails are available could have been done a month in advance to let people know of this event?x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Anne Klepacz
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Re: Liverpool meeting

Postby Anne Klepacz » Wed 09 Apr 2014 10:10 am

The meeting was advertised in the last newsletter which went out to all our mailing list members a month before as well as being advertised on the forum and on the events ticker.

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Re: Liverpool meeting

Postby GarethB » Fri 11 Apr 2014 6:21 am

I would say this is about normal!

When I have attended local meetings in the East and West Midlands, this would be about the average number of people that turn up. It is many yeasr since I visited the London goup but if I recall correctly, their attendance wasn't much higher.

Perhaps to capture a wider audience those in the catchment area of he local group who attend another hospital could make a copy of the invitation so that it can be posted in other hospitals to try and attrract people who aren't on the forum or mailing list?

The West Midlands local meting is just over 20 miles from the hospital I go to an 40 miles from my home and when a local group meeting invitation arrives, I make sure a copy gets put up in the eye clinic.

There are a lot of people with KC but very few from my experience relatively few activey seek out support for one reason or another. Unfortunatly the mailing list support groups hold is only for those seeking support and that have made contact with the group.

To advertise in popular health magazines or the more general interest magazines a quarter page advertisement for a month is at least £600 for a single appearance in the magazine and that would be towards the back. National news papers I believe charge far more.
Gareth

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Re: Liverpool meeting

Postby FfiB_91 » Thu 22 May 2014 11:31 pm

I was very disappointed that I missed this. I was due for refractive surgery otherwise I would have been there. I will be attending the next meeting and have offered to contribute with arranging it or in any other way I can help or get involved. I am keen to network with othe KCrs and also to share positive experiences about KC and work which is the main challange I have with the disease.

FfiB
Survivor not Victim. Dwi'n siarad Cymraeg.


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