CEO's Report to NEC - May 26, 2007
NEC Meeting 26th May 2007 – CEO’s Report
Media
Since the last CEO’s Report in February we have managed to maintain a high profile for the Association in the Media. The majority of this media coverage was related initially with Organ Donor Awareness in March followed by the Sick Waiting Campaign in April. This included national TV, radio, and newspapers in addition to local radio. TV coverage included a special feature on RTE 1 on the 6, 9, & 11pm News; a special CF feature on Prime Time (RTE 1); questions asked during the Leaders Debate; questions asked during the final pre election interview with the Taoiseach; two 15 minute slots on Newstalk FM106 on the George Hook Show – Right Hook; considerable coverage on Morning Ireland; multiple local radio interviews including Dundalk, Castlebar, WLRFM, and FM103 Cork; a main article in the Medical Supplement of the Irish Times; a follow on news feature in the Irish Times, and Irish Examiner; and also coverage in the Irish Medical Times. Special appreciation needs to be given to all who assisted in promoting CF to the media – particularly Orla Tinsley, Alison Kenny, Brendan Sinnott, Zoe Woodward and Tim O’Donoghue.
Campaigns
Donor Awareness
This was the first year that the Association launched its own national donor awareness campaign. This followed on from the excellent regional campaign “My Life Your Choice” that was run last year by Mary Hand and her team of volunteers. Posters and information cards were prepared in advance. All branches were contacted and quantities of organ donor materials were sent in advance as per their individual requirements. We also received permission to distribute posters to all members of the Irish Opticians Association and to all Centra Supermarkets.
Our campaign was launched outside of the Mansion House in Dublin where the Irish Kidney Association was launching their National Donor Awareness Campaign. Our CFAI branded posters were on display on an Admobile outside of the Mansion House and this was used as a back drop for photographs for the press including ones with both Ryan Tubridy and the Minister of Health. The Admobile drove around Dublin for the day promoting organ donor awareness. A similar Admobile promotion was organised for Cork city with a photoshoot at Douglas Shopping Centre. This was well supported by members of the Southern Region and received local press and radio coverage. Our campaign did receive national and regional media coverage for example it was covered by the 6,9, &11pm News on RTE1, national newspapers including the Irish Times and the Irish Examiner, and national radio with a 15 min slot on the Right Hook where Dr Egan and Mikey Dwyer were interviewed, and Rosemary Fitzgerald was interviewed for Cork local radio.
As a direct result of our campaign we received a very generous offer of assistance from an Advertising Company to display posters at no cost on our behalf in the Dublin region at sites that have not been booked by paying customers. We had three large posters left over from the Admobiles and these were displayed at three sites around Dublin – Swords Road, Benburb Street and North Circular Road. This offer remains open to us in addition to access to billboard displays at all Luas Stations.
Pre Election Campaign – Sick Waiting
This campaign was launched with a photo opportunity outside of Dáil Eireann on 17th April with participating parents and PWCF. We were met by representatives of Fine Gael and the Labour party and were invited into Dáil Eireann by Mary Upton for coffee. Copies of the campaign pack were sent to all members of the Oireachtas (both TD’s and Senators), key decision makers in the HSE, the media, and all members of the Association. On the day of the launch one of the lead articles in the Medical Supplement of the Irish Times focused on CF issues. The campaign was designed to keep CF issues in the public eye and in front of those campaigning for votes. The campaign was able to capture significant media coverage including national and regions newspapers, national radio including a 15 minute interview of Rory Tallon and myself with George Hook, national TV - including a 7 minute Platform Series feature on Prime Time and aTV3 Ireland am in studio interview of Zoe Woodward (Dublin parent) and Tim O’Donoghue (Kerry parent & Build4Life committee member). A good indication that the campaign is having an effect was demonstrated when the Minister of Health was recently interviewed on Morning Ireland concerning the Nurses dispute. In this interview she stated do we want to put more money into “cancer care, into cystic fibrosis, and services for disability or do we want to pay nurses and others ……” This shows that CF is an issue that has been profiled in the political arena. This was substantiated further as CF was raised as an issue in the final Prime Time debate between the leaders of the two main parties and was also raised as a main issue in the final interview of An Taoiseach before the election. CF now is a national issue and the campaign continues. All new TD’s will receive copies of our campaign information and it is now very important that all members play their part and return their signed campaign postcards for the new Minister of Health.
Medical Issues
Transplants
There has been one lung transplant this year on an Irish CF patient in Newcastle. There has been no transplant activity so far at the Mater.
David Fitzgerald and I met with Angela Fitzgerald, HSE Network Manager responsible for the Mater Hospital on 12th February 2007. She stated that the Irish lung transplant programme was being ramped up and that the Mater was performing beyond the expectations of the HSE. In spite of this the HSE is slow to sever links with Newcastle and a contract for 2007 has been negotiated with the hospital. Newcastle is contracted to undertake six lung transplants on Irish patients during 2007 for a fixed fee and any additional transplants would be charged on a per head basis. We were informed that funding has been made available to address capacity issues and that a new heart/lung theatre is in the capital programme of the hospital. The HSE stressed that no patient would be disadvantaged as a result of the transition process between Newcastle and the Mater. We stressed the great concern of the Association that no lung transplant has yet been carried out on a CF patient. We also stressed the importance of communication as there is a lot of uncertainty and concern re the lung transplant programme and the selection process to get on the various transplant lists. An information meeting was to be held on between the various patient groups interested in lung transplantation, the Mater transplant team and the HSE on 25th May 2007. This meeting was cancelled the day before it was scheduled to take place due to the work to rule by the hospital consultants. At our last Officers meeting it was decided that the Association would also go on a fact finding mission to Newcastle. We are currently arranging a suitable date to meet with the key people there.
St Vincent’s Hospital Update
No further meetings have been held between the Association and representatives of the hospital. A meeting was scheduled for 27th April and this was cancelled due to pressures on the HSE from the nurses’ strike. David Crowley met with the Minister of Health and tested ideas around building templates for CF centres around the country and the openness of the Minister to public private partnership in the funding and development of these centres. This possibility will be developed in parallel with full funding from the HSE and will not be allowed to delay the roll out of any new facility.
The status quo on this development remains the same in that a hospital / HSE project team has been established and a potential site on the hospital grounds has been identified.
Cork University Hospital
A third respiratory consultant, Dr Barry Plant has been appointed and it is expected that he will take up his post in August/September. He will be specialising more in CF than Dr Mike Henry. The existing consultants adult and paediatric have already given their input to the hospital management for a “statement of need” to develop the adult CF service at CUH. The Build4Life Committee are currently preparing a statement of need and will be presenting this to the HSE. In my last meeting with hospital management they stated that the nurses’ dispute and the tender for the new cardiology unit was delaying the planning process for CF services. There was an announcement in the press that the tender for the cardiology unit has now been signed and this development will be starting immediately.
HSE Working Group
The release and implementation of the recommendations of the CF Working Group was one of the demands in the “Sick Waiting” campaign. This issue was covered in the article published in the Irish Times Medical Supplement. The reporter obtained a statement from the HSE that the findings would be published shortly. Within two days of this statement a final draft was released to members of the working group for comment. The Association have commented on this draft and the ball is now back in the HSE’s court.
Internal Review
After the recent AGM and EGM was held to vote on changing the status of the Association to a company limited by guarantee. The motion to change the status was carried. This change will be effective from November 1st 2007.
National Conference
The 2007 National Congress was held in the Corrib Great Southern Hotel, Galway 23-25th March 2007. This was a very successful meeting and gratitude is expressed to all who contributed to the scientific programme and social events. All presentations were broadcast live on the web and copies of these can be viewed on our website.
Fundraising
Year to date cumulative income (to the end of April) stands as follows:
Branch Income € 133,629
Fundraising Income € 153,129
Other income € 55,810
Total YTD Income € 342,568
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