UK Keratoconus Self Help and Support Association
Anne Klepacz writes...
This is the title of a campaign being run by Gill Levy, of the Royal National Institute for the Blind (RNIB) Multiple Disability Unit. She is very concerned by the way sight problems among those with learning disabilities are often ignored or not recognised, even though conditions like cataracts and keratoconus are actually more frequent among this group than in the general population.
On 25th October, Gill organised a launch of the campaign in the Houses of Parliament, in order to get MPs involved. Gill tells me that almost half the enquiries she gets these days are about keratoconus, which was why I got an invitation to come along.
The event was held in the Terrace Pavilion of the House of Commons, the glass- covered pavilion facing the river Thames, which you can see from Westminster Bridge. It felt very strange being on the inside, looking out! The occasion was hosted by the Bristol MP, Roger Berry, and among other VIPs, there were the distinguished figures of Lord Ashley (long involved in campaigns for the disabled) and Sir George Young. Other invitees included representatives of various organisations working in the field of learning disability, optometrists, community workers and, most importantly, people who had been involved in the making of a video "Right to Sight", made to demonstrate the sort of care that this client group should be getting, and what can be achieved.
As well as showing the video, Gill gave a very impressive talk about the need to make carers, health staff and residential care staff more aware of potential eye problems and what can be done. Displays included copies of the various factsheets which the Multiple Disabilities Unit has produced to help people with learning disabilities and those working with them, and of course, I took along copies of our Keratoconus booklet. For me, as well as an exciting opportunity to see the Palace of Westminster from the 'inside', it was a chance to raise the profile of keratoconus, and to make some useful contacts. For those with learning disabilities, the 'Access to Eye Care' campaign should mean more attention being paid to eye problems among this group, and hopefully less likelihood of being told 'go away, there's nothing we can do for you' which has happened all too often in the past.
Have you got your new style Keratoconus Group T-Shirt yet?
The T-Shirts are BLACK. The writing is MILLENNIUM SILVER and the circles are MILLENNIUM PURPLE.
Keratoconus T Shirts (large/extra large only) are available @ £8 each inc p&p
As you may remember from previous newsletters, The Keratoconus Group is now a member of an umbrella group called The Long-term Medical Conditions Alliance. LMCA was formed principally to give a stronger voice to The needs of people with long term or 'chronic' medical conditions, which tend to be ignored in the rush to put money and resources into 'acute' illnesses, which are more dramatic and grab more of the headlines.
LMCA organises various events at which member organisations can get together and share experiences. They have now set up a network for 'small member organisations' which promises to be particularly useful in getting together groups such as ours, which are either run completely by volunteers or have just a few (generally part-time) workers. I attended the first meeting of the network at the end of November, which included advice on how to get 'the message' across clearly and concisely (especially useful when applying for grants or funding), and a session on how LMCA could help groups such as ours to share experiences or even resources (so often we seem to be 'reinventing the wheel' in our efforts to get things done).
We are also involved in meetings discussing the setting up of an umbrella group to unite organisations for specific eye conditions (to be called SPECS). Among the ideas is to produce one leaflet which would list all the charities and self-help groups dealing with different eye conditions, which could be distributed to hospital eye departments up and down the country, and a webs ite, again including all the groups for different eye conditions, with links for easy access. Like LMCA, SPECS would have a stronger voice in representing the interests of people with eye conditions than any of the individual groups would have on their own.
Registration has now closed for the Keratoconus Group's first national conference on Saturday 17 March 2001. Due to an overwhelming response from members we have had to close registration. Unfortunately we have a limited capacity at the King's Fund and admission on the day will be to participants who have registered in advance only. However if you wish your name to be added to the waiting list please phone Mike Oliver 020-8318 9539.
For those members, and others who have registered you should have all received confirmation of your registration by now. Further details about the conference will follow in due course. We look forward to meeting participants on Saturday 17 March for what we hope will be an informative and stimulating day. Contact Mike Oliver 020-8318 9539 if you have any queries about the conference.
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Page last updated: 19 February, 2015