TV Program on KC - 2

[GarethB]

Shame this was locked so quickly, but a question to the KC Group committee;

Will they be taking part to represent the group and promote the groups activities and the wider issues faced by those with KC?

Just having individuals talking about their own condition is really just a series of case studies and if more extreme cases are shown then this may scare people with KC that have just been diagnosed or dilute the issues some people have.

For me I have no issues with KC but take a look at some other posts and it is obvious some find it quite debilitating so with the balanced knowledge the committee has as some have been serving members for in excess of ten years must have something to offer to ensure a balanced representation of KC is given.

[longhoc]

Hi Gareth, as far as I know, no-one on the Committee will be taking part in the programme. For me, I'd have loved to but the alas not so small matter of a day-job and family precluded this. If we could stretch to having paid support staff things would be different but alas that's not the case here.

And the editorial policy for the programme makers is totally outside of our control. We obviously hope that they'll present a fair, balanced and representative view. Equally well, they could present a highly sensationalised yuck-fest featuring the most extreme cases of corneal disease. The presence of -- or lack of -- any of the Committee members on the programme will have no bearing on the matter. The producers will go with whichever approach they wish to. This, alas, is the reality of the mass media today (and it probably always has been going back to the time of the first cave paintings !)

Cheers

Chris

[space_cadet]

It is a great shame no member of the commitee feels able to contribute to what has the potential to be a educational programe to a wider audience which has the ability to not only raise the profile of KC within the wider community but also the Charity which as I have previously said in other posts perhaps may be a good idea as funding cuts are hitting accross the spectrum especially the charitable resource area, and by a committee member speaking could perhaps be utilised to tap into more funding so higher media awareness could be raised.

IT is sad I feel that no one feels able to be a voice fot he charity at such a time when the media are prepared to give KC the spot light. A wasted oportunity in my opinion.

Yes individuals could and will give their stories but as we keep saying time n time again the only uniting thing we all have in common is teh diagnoses of KC but how it affects us each is very different and vast variartion of how we are affected does occur as does the treatement we are given depending on where in our personal KC journey we are.

Lea

[longhoc]

Hi Lea

Like I say, I'd have really liked to have been able to participate in this programme. But I -- along with the other committee members who work, have families etc. -- have to balance the demands of the charity vs. the demands of the rest of my life. And even for those of us who don't work full time, dealing with the media is a pretty daunting task and not for the faint hearted ! You have to be really on the ball fielding questions which can be on any subject without prior notice usually. I've done it myself and despite being well briefed and experienced, there have been times where even I ended up just gibbering inanely. So it's not something you can volunteer for if you're not comfortable doing it.

We also have to consider the concept of a "volunteer". In the context of a charity, it means just that; when we get a request to do this- or that- which needs our time, we ask the other committee members if they want to -- and have the time to -- undertake whatever it is we've been asked to do. We all feel free to say "yes please" or "no thanks" as our circumstances/wishes/constraints influence us.

A charity that turns those "asks" into "demands" of its volunteers is heading for trouble. To give an example, I'm familiar with another charity -- a order-of-magnitude larger concern than us with national reach and scale. I won't name names as that's unfair, but you'd know it if I mentioned it. This charity has recently been met with what I can only describe as a mutiny from its (small army of) volunteers. The charity has professional managers and they, in their wisdom, were seeking to be very prescriptive in what they wanted their volunteers to do -- or not do. In fairness to the managers, what they were trying to do was make the organisation "more consistent with its brand values" and "provide better uniformity to its service users" (yes, there are people who are actually paid to spout this sort of stuff).

What this meant for the volunteers was a series of sometimes overt -- or sometimes covert via an appeal-to-one's-sense-of-duty or guilt -- demands that they go to this-, do that-, say the-other-, or whatever the dictat happened to be. In short, a line was crossed about what a "volunteer" is and is not. The management of this large charity was faced with a choice: respect the spirit in which volunteers offered their time or pay up and replace them with salaried employees. As they didn't want to part with their money (or didn't have it to part with), they took the only deal on the table which is the volunteers' services accepted on the volunteers' terms.

The same applies to me. If I'm paid, I'll do a job and I might end up doing things I wouldn't otherwise want to do, but I'll do them because I'm being paid. If you don't pay me, you can ask me to do things. I might do them. Or I might not. But I get to choose. If the "asking" happens repeatedly -- and even if it's not a direct ask but an appeal to my sense of duty or guilt -- then it will get met with an initially polite (but an eventually terse) "No, I'm not doing that".

I'm only speaking for myself and not speaking for the whole of the Committee here, they can/will do that themselves if they want to. But the same basic dynamic is in play for them too.

Cheers

Chris

[space_cadet]

I have done both national and local tv and radio interviews on mental health since 2005, both live and pre records.

NEVER if I have been asked to give teh details of a charity has it been without a pre worded schpiel from the charity in question as to do so would be both reckless and stupid not to mention the potential of liable.

I would be uncomfortable giving the KC groups details if i was to be interviewed for this as feel the charity is not giving its backing more passing the buck, as a reputable organisation would either on the phone / skype or in person alieviate fears of a individual prior to filming and be there for moral support, therefore if i was to be interviewed i would make clear I am a individual ...

It is also not unreasonable to ask for questions in advanced and to meet with production team prior to filming to enable a rapour to develop, and to ask for a copy prior to airing,

yes edits can be made, but provided a individual is true to themselves and their story they cant be misrepresented by wordingas the words they speak will be their own.

[kieran19685]

I have sudmitted my application form and spoke to them this morning. I would like to give my experience of KC.

[Loopy-Lou]

I wouldn't feel able to participate in the programme but would like to see a broad range of experience presented, because everyone is so different in how they cope, and with the difficulties they've had. It would also be an opportunity to get across a few key issues regarding policy and clinical practise. Whenever drama's have featured KC it's always so unrealistic i.e. graft surgery with big bandage around the head followed by a few blurry moments then perfect sight.
We know it's not that simple, and sometimes the more "mundane" stuff grinds like walking down the road with windy grit blinding under RGP's, walking into the glass fronted buildings. The 'part-time partial sight', the long term uncertainties of graft survival/lens tolerance, difficulties with education, and employment where employers don't/can't make 'reasonable' adjustment's'. The recent threat of a court case from the RNIB to the DWP illustrate difficulties for those in receipt of in or in or out of work benefits, I've seen accounts of Job Centres making no allowances for less visible visual impairment i.e. no white stick/dog.
Maybe questions from the producers could be put up here and members could answer either on the board, by PM or to committee members to pass on as able.

[Loopy-Lou]

ps Chris is of course right, there is no editorial control, and even when programme makers say they intend to observe or not do certain things they can do exactly the opposite. The media is not easy to deal with.
Rarely do we see any patient group get full editorial control, the last time it happened in mental health was in 1986

[John Smith]

Actually, just to correct Chris, I think at least one committee member (who doesn't post here) is going to take part in the programme.

Watch this space!