Mugged in Soho by MND

“Text cloud” for this post below, created by www.wordle.net

Last week I went to the Curzon Soho to see Sarah’s Story, an awareness raising cinema advert produced for the MND Association. It runs for 90 seconds. Believe me, you don’t want it to be longer; your awareness couldn’t take any more raising at this intensity in one sitting. Brilliantly conceived and executed using full-on cinematic effects, Sarah’s Story graphically – and viscerally – conveys what it is like to be mugged by an unseen assailant who progressively assaults and steals your normal functions leaving your mind trapped in a malfunctioning body. In this case the “mugger” is motor neurone disease (MND).

In 2007 the MND Association did the poster campaign on the Underground “John’s Journey” which attracted complaints to the ASA, but lots of good publicity for their cause. I wouldn’t be surprised if the same thing happens this time, only more so. When you are trying to get over what it means to be assaulted by a devastating neurodegenerative disease, pulling your punches does no good. So full marks to everyone on the MND Association team who delivered this result and got it all donated, probably about £1m in production resources.

Sarah’s Story will upset many, including probably some people with MND. But that is unavoidable and part of what it has to do to get its message over. Sarah Ezekiel – the real life Sarah whose story it dramatises – spoke very movingly after the screening about her motivation to participate in the filming and production process. Using automated speech of course she said,

I’m so pleased that I was able to take part in ‘Sarah’s Story’. I think the advert is shocking and disturbing and reflects the devastation that MND causes. I hope that it will raise more awareness and we will be nearer to finding a cure.”

Here’s something else I find shocking – Sarah’s Story has a “15 certificate” for cinema release. Younger British filmgoers don’t need protecting from the truth of what it is really like to have a devastating illness, do they? Perhaps the British Board of Film Classification would like to explain just who they think they are protecting and from what by slapping on this restriction? Of course having MND is horrible: that’s just the point!

As well as the microsite with the advert and stills from the filming, if you are into the techno side of modern film-making, then spend 13 minutes to watch the “making of Sarah’s Story” for a behind the scenes look at how this got from concept to screen. Then you will appreciate where all the talent and money goes to make 90 high-impact seconds on the big screen.  You won’t forget it easily.  Nor should you.

Yes we have some bananas – the first Partnership newsletter of 2009 starts on a fruity note

Caroline Millar has investigated the furrows and fields of consultation and reviews for us the new crop of acronyms – she is now on the look out for a decent one to describe the sort of people who make a positive contribution to public life: Sensible Undervalued Citizens, Keen, Empowered and Rational.  Got any (better) suggestions? Leave them as a comment on her article.

Consultation in 2009

Caroline was in action again in January on the topic of consultation after attending a round table session held by The Consultation Institute wondering what 2009 held for the future of consultation and making the point that “I am sure I am not the only person working in the field of public involvement who has been wondering what the impact of our current financial crisis will be on the work which organisations have been doing to engage with public and with public service users.” Again if you have your own views on that please tell us.

Send them back to MORI

Andrew Craig reminded us that while the season to be jolly may well have passed, for a sample of health care users, it definitely was the season to fill in that questionnaire and send it back to MORI (did you spot the rhyme?) He was gratified to be chosen “How kind of the Minister of State for Health, I thought, to take the time to write to me and about 5.5m other registered patients in England as part of the £8m exercise to find out more about patient experiences.”

As conscientious as ever where matters of health care are concerned, he managed to fill it in not just once but three times. We very much hope that this will not invalidate the national sample and look forward to seeing the data in due course.

Direct Payments for both Health and Social Care – a big step forward

The issue of individual commissioning budgets will become increasingly implemented as well as debated in 2009. Andrew wrote “The Health Bill 2009 introduced into Parliament on 15 January boosts the personalisation and choice agendas by enabling direct payments for healthcare to people in England.  There are already 60,000 people receiving direct payments for social care.  This is a big step towards the objective of individualised commissioning which joins up health and social care.  MAC strongly advocates this for people with long term conditions who wish to take greater degrees of control over planning and delivering their own comprehensive services. More power to the user.  It also points towards the achievement by 2010 of individually agreed care plans.” He went on to quote Jon Glasby,  professor of health and social care at Birmingham University,  who said, “personal budgets have allowed people in social care to be much more imaginative and use funds more carefully than the system did. There is no reason why this should not happen in health.  However, it will need to be carefully introduced.”

We look forward to staying in touch with you in 2009.

And if your plans involve a trip on a plane, loosen up and prepare for your journey by joining me on a trip to the customer service theatre that is the check-in queue.

Don’t slip up on those new acronyms

I can’t exactly remember why Billy Connolly took to wearing these splendid Big Banana Boots in the nineteen seventies.  I do remember my parents going to see him and telling me how unsuitable he was for nice young girls (which is what I was then, more or less).  All I know is that I can’t see a banana now without thinking of them.  What a delight that they now have pride of place in Glasgow’s splendid celebration of people power, the People’s Palace. 

Now the humble banana has taken on a new role in the venacular of citizen empowerment.  BANANA has apparently replaced NIMBY (Not In My Back Yard) as the acronym of choice when describing public resistance to building projects: Build Absolutely Nothing Anywhere Near Anything.  Another acronym which manages to encompass all the weaseliness you would expect from public officials trying to put a positive spin on recalcitrant members of the community is LULU: Locally Undesirable Land Use.  But my special favourite is CAVE: Citizens Against Virtually Everything – sometimes it feels like there are a lot of them about. 

 

What we need now is a nice acronym for the sort of people who make a positive contribution to public life: Sensible Undervalued Citizens, Keen, Empowered and Rational.  Got any suggestions?