A TV programme on KC

[Anne Klepacz]

We have been contacted by a TV company who asked if any of our members would be happy to take part in this. They need any volunteers to get in touch by the end of February.
Anne

New Medical Television Programme
Looking for People with Keratoconus
Optomen Television, the BAFTA award-winning producers of Mary Portas: Queen of Shops, Kevin McCloud’s Man Made Home and Heston Blumenthal’s Feast is producing a brand new TV medical series for the Discovery Network and we need your help.
In this series, we’ll be exploring a variety of health conditions in the hope that we can raise awareness on them. We’re looking for people with Keratoconus to take part in the programme to discuss their condition and to explain to others what it is like to live with it on a daily basis. By doing this, we’re hoping to raise general awareness on the condition, its symptoms and the types of treatment/care that is currently available.
We’ll also be working with a number of specialists throughout this series and, for those who take part in the programme, we can offer a free (off-screen) consultation with one of them. So perhaps you’d like a second opinion or advice on the types of treatments/care that is available to you?
For a no obligation, friendly and confidential chat with one of the team email healthshow@optomen.com or call 0203 227 5993 leaving your name, age and telephone number
(ALL APPLICANTS MUST BE 18 OR OVER)
Please Note: We will use and store the personal details contained in your email and any further response in accordance with the Data Protection Act 1998, for the purposes of producing the Programme.

[space_cadet]

Jus spoke to them x

[CrippsCorner]

This sounds great. I don't think I'm the ideal candidate as I've only been living with the condition for just over a year... good luck to anyone who applies though.

Look forward to seeing it, shame I don't have Sky but hopefully I'll find a way.

[Steven Williams]

We have a registered Charity, one voice, to represent us all so I am requesting that our committee publish a press statement what information was supplied to the company.

Inviting individuals to contact the TV station direct, in my opinion, is not a wise move and in my opinion puts individuals in a vulnerable position.

The whole purpose of our charity is to represent all of us diagnosed with KC.

Perhaps the TV could solve the mystery of why our charity's operations are not transparent and accountable and publish on our charity's website - minutes of constitution, committee meeting minutes, annual accounts, names and full contact details of our Trustees and committee members, etc and why oppression and suppression rules OK on this forum when people speak out the truth.

But when it comes to TV and the truth, truth does not stand a chance, just ask the Hillsborough or Jimmy Saville's victims for starters.

[Steven Williams]

Just an additional comment/suggestion to my previous post if it is ever published

why does our charity not consider creating its own media, a podcast so it can maintain control rather than delegate this to a third party whose interests may not be what it seems.

I would expect the TV company to be getting the information first from the professional medical experts who are there to lead our treatment and health care.

[longhoc]

Hi Steven

We felt it best to let members approach the TV production company directly if they wished to get involved with the programme they're proposing.

We often get approached by medical professionals, research organisations, media, government and QANGO organisations etc. to provide input into their work. I myself was involved in the priority setting for sight loss workshops hosted by the James Lind Alliance http://www.lindalliance.org (conclusions at http://fightforsight.org.uk/psp-corneal ... conditions) which was extremely rewarding. But I was speaking there first and foremost as a person with Keratoconus because all I can accurately relay is my own individual experiences. I couldn't possibly cover all aspects of Keratoconus ! Which is why we always try to publicise such requests for information where the requestor wants to get individual's stories, as is the case here.

Conversely, if the invitation to participate in a study or similar is seeking responses from the general population of people with Keratoconus, we'd usually set up a survey on the Forum -- we've done this several times in the past. But for the programme-maker we're discussing, they wanted people's stories rather than a homogenised summary. Hence the "get in touch with the production company directly if you'd like to be involved" message we put out here.

Cheers

Chris

[longhoc]

I'll lock this topic from this point on -- if anyone wishes to contribute to the programme, by all means contact the production company.