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General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

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Anne Klepacz
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Postby Anne Klepacz » Tue 05 Jun 2007 9:17 pm

A reminder of the conditions that all forum users sign up and agree to on entering the forum and especially that entries 'do not offer opinions on medical competence in any way'.
In the past few months there have been a couple of posts in which derogatory remarks have been made about individual health professionals or hospitals. Such remarks come under the laws of libel and leave the poster and the KC Group, the charity which hosts this forum, open to legal action. We know how frustrating and distressing KC can be at times and how important it is for members to be able to talk to others about their experiences. However, can everyone please ensure that any negative remarks do NOT identify individuals or clinics. Unacceptable entries will be edited or removed and the poster warned and, if need be, banned from the forum.
We want to continue to provide this forum as a place where people can get support and a chance to talk to others who understand. Please help us to do that.
Anne

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mike scott
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Postby mike scott » Tue 05 Jun 2007 9:43 pm

i would like to second Annes post.
Any derogatory remarks especially against the medical proffesssion, that we rely upon so greatly could actually alienate us from them, when in actual fact we need to be working hand in hand for the greater good.
It is also worth remembering that everyone involved with the group works very hard to smooth the way to setting up important and influential meeting places and this work is all voluntary.
The group is there as a much needed and valued support mechanism for the greater good of everyone.
Lets all respect the parts we all play to maintain the success of the organisation.

Mike Scott
onwards and upwards

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ChrisK
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Postby ChrisK » Thu 07 Jun 2007 1:01 am

I must apologise.

In future I'll keep my degoratory remarks about my lack of medical expertise when I'm applying my eye drops to myself. :oops:

On a serious note, I do agree with what has been said. But have nothing but praise for the medical care I've received. :D

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Postby morag » Fri 08 Jun 2007 8:27 am

I do understand what your saying
But what if you have had a bad experience with certain people, places and things – do you let them just carry on to abuse? Surely they need to be exposed so that they no longer are able to continue?
Thankfully I have only experienced of this

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GarethB
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Postby GarethB » Fri 08 Jun 2007 8:43 am

If there is evidence of bad practice, then the appropriate action would be through solicitors using the appropriate complaints procedure of the organisation concerned.

As we do not have the evidence we are open to a liable prosecution which as a group we do not have funds to defend and basically that would mean the end of the support group.

The media have a knack of finding stories of medical abuse so if such a case were to occur, they would soon publicise it.

Many of the poeple that help us look at this forum and not all are registerd, just like the patients we want to support.
Gareth

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Sweet
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Postby Sweet » Fri 08 Jun 2007 10:19 am

I would just like to agree with what Anne and Gareth have posted here. We are a voluntary charity organisation and open to many legal issues.

I have been very lucky in gaining excellent care and treatment and have only come across one optometrist which I was not happy with. I have not named them here but I know that I could report them if I wanted to. That is the better way of doing it. We are all entitled to our own opinions and indeed while I didn't find this optometrist helpful some others might do!

If we just keep professionals names off the forums we stand a better chance!

Thanks, love Sweet X x X
Sweet X x X

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Anne Klepacz
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Postby Anne Klepacz » Fri 08 Jun 2007 1:24 pm

Just to add that every hospital and Primary Care Trust now has a Patients Advice and Liaison Service (PALS). This (quoting from a PALS website) is 'a confidential service dealing with questions or concerns regarding care or treatment from NHS services'. So this is probably the first port of call for anyone who wants to raise concerns.
Anne

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Steven Williams
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Postby Steven Williams » Wed 27 Jun 2007 10:51 pm

These threats of censorship and banning of KCers who come here with good intentions to help each other by sharing information and experience really does concern me. :shock:

as Delyth/Morag states

But what if you have had a bad experience with certain people, places and things – do you let them just carry on to abuse? Surely they need to be exposed so that they no longer are able to continue?


Internal complaints procedures in public bodies are internally investigated and they dont work for the customer or patient as they put their own interests first.

As for the group being exposed to libel a simple disclaimer on the front page would protect it.

Lets be honest here if the NHS/professional health care system was perfect there would be no need for self help websites like this.

As an organisation we need to encourage excellence and identify these centres of excellence.

We can only do that by being truthful, factual and sharing information, even if it is negative, thats not being derogatory.
Last edited by Steven Williams on Fri 29 Jun 2007 9:28 pm, edited 1 time in total.

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GarethB
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Postby GarethB » Thu 28 Jun 2007 7:31 am

As for the group being exposed to libel a simple disclaimer on the front page would protect it.


If only it were that simple! Anne recently attended a confrence for charities that run forums like ours. The owners of the forum are responsible for what gets posted which is why we have to moderate posts where appropriate.

The hospital complain system does work in my experience. When my daughter was born, my wife and I had a list of 30 issues against the ward my wife and daughetr were in. These were raised with the local health visitor and investigated by the hospital with the threat of legal action hanging over them as we progressed the complaint through our solicitor. The hospital changed many procedures, staff were disciplined, we were compensated for legal fees and the rest of the compensation went to the IVF clinic that is part of the same hospital. Like others with issues against a hospital we are more interested in patient care rather than money.

Another case was after a motoring accident after the poor treatment I received in 1986. That resulted in the doctor in the A&E being struck off and no longer allowed to practice medicine due to gross negligence.
Gareth

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Vic
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Postby Vic » Thu 28 Jun 2007 10:43 am

Steven Williams wrote:Lets be honest here if the NHS/professional health care system was perfect there would be no need for self help websites like this.


I think even if the health care system were perfect, there would always be a need for a website such as this - there is nothing like first hand experience and sharing it, nothing can take the place of that or emulate it. That first hand knowledge and experience that we have is valuable. We know just what it is like to live with KC and its little frustrations each day, and it's so helpful to be able to share that, share experiences of lenses / grafts with others who have been through the same thing, or even just share little victories or moans. And some of the hints and tips that have been shared here can only come from people who have been there themselves. And that sort of help is invaluable!
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