Clostridium difficile Support

[Annie]

The day started early with Graziella appearing live on GMTV, with shots of our banner, together with an interview recorded the previous day with Nadia. The banner was put together using photographs of 80 C.diff victims, including 15 survivors. It is 10 metres long and the slogan reads:

Clostridium Difficile – The innocent victims of ignorance – Now will you listen.

From 10.00am onwards, members of the C diff support group started to arrive at the Royal Horseguards Hotel in Whitehall. Greeted by Nadia and Chris, people were welcomed and over tea and coffee introduced themselves. I think the final total was about 37 people. The 17 placards were all on display.

In the meantime Graziella’s phone started to ring. It literally did not stop ringing until 4.00pm later that day. Film crews were getting ready outside the entrance to the hotel and several reporters were inside the hotel getting people’s individual stories. Suddenly a call came in from Channel 4 – could we get our banner and some members down to Parliament for 10.15? A taxi arrived and 4 of us plus banner plus a photographer from a London paper jumped in. (We left one member behind by accident but she caught up in another taxi – sorry Jackie!) Banner unfurled, filmed, Graziella interviewed again, lots of photos, jumped back in taxi and headed back to the hotel. (Remembered Jackie this time.)

Back at the meeting room there was a pretty emotional atmosphere, I’m not sure how many people were spoken to by the press, but my dad was filmed in an interview with the BBC outside the hotel.

Our plan was to leave the hotel and make the short walk around the corner to Downing Street. As we all filed out of the hotel, we were asked to unfurl the banner again, hold up our placards and Graziella was interviewed again with us in the background. Photographers were there too taking stills.

Our two pre arranged police escorts had not arrived, but a very nice police lady escorted us down the road, banner on show, placards held high. We positioned ourselves directly opposite the gates to No.10. I then have no idea where all the photographers, reporters, journalists and more film crews arrived from but there seemed to be a bit of a frenzy. Photographers were dodging the traffic trying to get the best shots; journalists were yelling anyone from Lincoln, anyone from Kent, anyone here a survivor? I know a few of our members did interviews both on and off camera.

Sandra had kindly printed off 500 flyers and every member took a handful and gave them out to passers by. People stopped to talk and some shouted encouragement for what we were doing.

We had been offered the chance for six of us to walk up to the door of Number 10 Downing Street. So whilst the rest of us continued with the press, Graziella, Mark, Shahab (Graziella’s son), Nadia, Chris and Sandra all walked up to Number 10 accompanied by yet more photographers. They handed in a selection of personal stories from some of our members. Shortly after the six rejoined the group, we were joined by Andrew Lansley MP, Shadow Secretary of State for Health. He met and chatted to some of us and there were more filmed interviews. Text messages started to arrive saying we were on the news.

Ann Keen, Health Minister, had offered to meet with us in the Department of Health offices. We wanted a government minister to come and see the ‘faces behind the figures’. We were offered the chance to go inside the Dept of Health and the Minister would address us as a group and listen to our concerns. They said they had a room, with refreshments, all ready for us. So, while Graziella was whisked away for yet another interview (Channel 5?), the troops were rallied and we marched on up to the Dept of Health, banner held proudly, placards held high.

I said that we could only spend 10 to 15 minutes in the Dept of Health offices, but Ann Keen said she was prepared to listen to anything that any of our members had to say there and then. While our members were talking I asked if our banner could be unravelled again, thanks to those of you who volunteered to stand there holding it throughout this time at the side of the meeting room. She gave us an absolute promise that we could meet with her again, and an absolute promise that Alan Johnson would also meet with us. Some members bravely spoke out, not an easy thing to do. At the end when we had to leave, I asked Ann Keen to walk along our banner looking at all the faces. It was important that our members saw a government minister reflecting on the personal tragedy of c.diff. Graziella arrived back and joined us, she then presented Ann Keen with more personal stories from the site and from emails that she had received. (If anyone took any notes from this meeting or can remember anything else that was said please forward it on to me, I have only touched briefly on it here.)

I honestly felt that our actions and words made a huge impact in this short meeting. I felt we were listened to with respect and an admiration for what we had done and achieved. I cannot stress enough how proud I felt to be a part of this group of people who were probably bursting with anger but conducted themselves with dignity.

We then left the offices of the Dept of Health and continued to walk towards Parliament. The police, who incidentally were really helpful throughout the whole day, were still escorting us. They stopped the traffic to allow us to cross the roads. We assembled on the green with our banner and placards once again for photographers and film crew (think there was one left at this stage). After they had all left we spent some time chatting to each other and slowly started to say our goodbyes. Those of us left headed back to the hotel. Someone picked up a copy of one of the London papers and already our banner was across almost half a page. Over tea and sandwiches we reflected on the day and gave our brave Catherine a bit of moral support for the live interview she was about to do with the BBC. This went out on News 24 at around 5.30pm.

If anyone has any further detail to add in here relevant to what happened during the day, please let me know, it was difficult to keep track of what was happening there was so much interest.

To view the pictures, click on the links:

http://www.cdiff-support.co.uk//forum/viewtopic.php?t=1804

http://www.cdiff-support.co.uk/forum/viewtopic.php?t=1808

To watch the Channel 4 News Report featuring the banner outside the Houses of Parliament, click on the link and 'watch the report'
http://www.channel4.com/news/articles/society/health/c+difficile+infection+rates+up+/989552

To watch the BBC News Item, click on the link and type 'Superbug figures offer hope' in the Search box.
http://news.bbc.co.uk/1/hi/video_and_audio/default.stm

http://news.bbc.co.uk/1/hi/england/kent/7073068.stm

To see how Sky News covered the event
http://news.sky.com/skynews/Home/Politics/Superbug-Trust-May-Have-Acted-Unlawfully/Article/20071111291097?lid=ARTICLE_1291097_Superbug%20Trust%20'May%20Have%20Acted%20Unlawfully'&lpos=searchresults

http://news.sky.com/skynews/article/0,,91211-1291097,00.html

More coverage on the BBC, go to the main BBC News website and type in
Johnson at C-diff hospital in the search box

[markbts]

Thanks for the report Annie,it sounds like you had a great day. Well done to one and all.---- Mark b

[Annie]

Not just a great day Mark, a very therapeutic one. Because my dad is a c.diff survivor, I don't have the deep emotional turmoil that most other people felt on that day. But in chatting to people, there was a very strong feeling of togetherness, of doing something, and hopefully achieving something too. I am probably getting a bit emotional myself, just reading some of the feedback from those that were there. Correct me if I'm wrong but I strongly felt that even if there had been no press interest, no Ministers interested, it still would have been a useful day and as Judith said, restored some faith.

[Catherine M]

It was a heavy duty day! Quite something. I have been pretty emotional since and shed a few tears explaining to others about the experience. On Tuesday I am going to Radio Leeds at 7am to do a 15 min slot on their peak time breakfast show.
I have just got back from an evening out with friends and have been chatting to one to discover that one of them now thinks they had C diff in hospital but never knew: all the symptoms including the depression. I found this so distressing. I cannot comprehend this lack of information, this cover up.
Annie, although your Dad is still here, I think you do get it. You understand. It was quite something. I was exhausted on Friday and could hardly function. People are hearing about C diff. This last week has made quite a difference. WHAT AN ACHIEVEMENT.
Catherine x

[roy]

And whilst standing in Parliment Sq I was interviewed by Iranian TV where did that one come from?
But what the hell any publicity is good.
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GETTING THERE !!
I am not a medic anything in my posts is my own opinion and from what I have learnt. A doctors advice should always be sought before following any advice.

[Nadia]

Iran??

[Annie]

This afternoon I had an enquiry from someone who supplies Assisted Communication Devices to disabled children, this equipment is often loaned through hospitals and they wanted to know if their cleaning regimes were appropriate to remove c.diff spores. I also had a message from a local hairdressers, they had heard about our campaign and asked if they could have some of our leaflets and they would display them in the salon. No-one there has been affected by c.diff, they are just horrified at what is going on and want to help raise awareness. Word is getting around.

[barberry]

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[Catherine M]

Another tack: maybe a gigantic inflatable pair of hands in hand washing position - something visual, guaranteed to get press along. Or a sink with running water with hand washing demo! Or rows of us with aprons on giving out bars of soap. In other words publicity stunts.......

[barberry]

deleted

[Catherine M]

I think there's a difference between our action on Nov 1st and standing outside a hospital. Possibly, they require different tactics. I think it would be irresponsible to stand with our banner outside a hospital where ill people and relatives of ill people could see it and add to their already high stress levels.
I don't think that would come over as constructive.

I think that our brilliant banner is best for situations where we are challenging managers and politicians, not where there are patients. I for one would hate to think we were responsible for scaring someone from going into hospital who really did need to go in. My recent interview at BBC Radio Leeds made me think about this. Had I just terrified someone and put them off going into hospital? Is that what we want? It's a fine line we tread.

I think aprons/bars of soap/leaflets is serious enough without being threatening to patients and relatives.

I also think that our own individual circumstances determine what we feel able to do. So if I were still in the raw state immediately after my Dad's death, I might not be able to contemplate anything like a 'publicity stunt'. Two years on, and I'm thinking 'what will stick in people's minds?'

...Just a few of my thoughts.

[barberry]

deleted

[Catherine M]

[Catherine M]

Actually what I would prefer to do is more along the lines of Nov 1st. We have such limited resources. And we've been invited back down to meet Anne Keen and Alan Johnson, so I guess that's our next focus.
Cx

[chrismc]

The link to the photo's appears to be broken!
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The very first requirement in a hospital is that it should do the sick no harm - Florence Nightingale