CEO's Report to NEC - January 2008
This report covers events from November 2007 through to January 2008
NEC Meeting 3rd January 2008 – CEO’s Report
This report covers activities from the 10th November 2007 to 30th January 2008.
A considerable portion of the above period was taken up in the change in governance of the Association from a voluntary organisation to a company limited by guarantee with no share capital. This was programmed to take place on the 30th November 2007 but due to a backlog at the Company’s Office our new registration number did not come through on time. This delayed the audit and changeover of National Office bank accounts to the new company. All this took place on 10th December 2007. The official company name for the Association is the Irish National Association for Cystic Fibrosis, a company limited by guarantee with no share capital, trading as the Cystic Fibrosis Association of Ireland. We could not register the existing name as the new company name as the Cystic Fibrosis Association of Ireland had previously been a registered company and had been dissolved. Our company registration number is 449954 and our Charity Number remains the same. New stationary has been ordered and it is a legal requirement that all board members names have to appear on the bottom of the first page of any correspondence. Our directors names are not printed on the stationary we use the footer functionality of Microsoft Word to do this. A Microsoft Word template is available from CF House for any branch requiring this for their branch secretary. You will notice that the current published directors are not the full list nominated directors. Not all B10’s were received on time and rather than delay the company registration process we had to submit those forms that were received at CF House. A second batch of forms has been submitted to FGS for filing. These names have to be formally approved and recorded at the next board meeting.
Campaigns
Every Breath 2008 Campaign – Awareness Week
Posters were commissioned by our PR Agency PCC. A number of drafts were circulated to a focus group of PWCF. A design for an A3 poster was selected and two options for a billboard poster were selected. Last year the international advertising company JC Decaux provided a limited number of billboard spaces for us for the Sick Waiting Campaign. This year we were fortunate enough to be nominated one of their charities for the year. With this they will post our billboards on prominent sites around the country at no rental cost for the whole of 2008.
Over 15,000 trolley coins, 8,000 lapel pins and a number of dolls have been distributed to branches and volunteers. The demand for dolls was low.
Two radio ads (a 20 sec and a 30 sec) were recorded and charity slots were booked on Radio 1, 2 FM, and Newstalk for Awareness Week. Many thanks to Daragh Crowley for volunteering to be the voice of CF on these ads.
Media coverage has been phenomenal in the weeks preceding Awareness Week. The catalyst for this was Orla Tynsley’s superb article to the Irish Times followed by a huge response to the Joe Duffy Show. CF House received questions as to why we did not play a highly visible role in the public debate. I can assure you that we played a very active role in supporting the public debate and included liaising daily with Orla. The media wanted to hear stories from the front line, from patients and families who had firsthand experience of CF services. Many thanks again to Orla and the other PWCF who played such a vital role in promoting awareness of CF.
Medical Issues
Transplant
There has been no reported transplant activity for Irish CF patients in either the Mater or Newcastle since the last CEO’s Report. One CF patient was called to the Mater but it proved to be a false alarm as the organs failed pre transplant. Representatives from the Association attended a meeting of all patient groups interested in lung transplantation on 11th December. David Fitzgerald reported on this at the last NEC meeting. The Mater reported that they have completed 16 lung transplants since the programme commenced in 2005. The hospital claims an unprecedented 100% success rate. The transplant’s history is as follows: 3 single lung transplants in 2005, 6 single and 3 double in 2006, 1 single and 3 double in 2007 (1 of these on a CF patient). The hospital reported that they carried out these procedures without having to perform a cardio pulmonary bypass. The transplant centre has also carried out two artificial lung transplants, the longest survived 140 days and went on to receive a double lung transplant. The Mater informed the meeting that the major constraint on activity was the availability of donors.
The CEO expressed the concerns of the Association to the Mater team and requested clarification on issues particularly relating to the waiting list selection process. This was put in writing to Mr Wood subsequent to the meeting as follows:
The Association has a Transplant Committee that is obliged to report back to our Board and General Membership on issues relating to lung transplantation. With this in mind could we request you to proof the following statement for its accuracy?
“It is our understanding that the current policy relating to patient selection for the Irish Lung Transplant Programme is as follows:
1. Any new Irish patient is automatically placed on the Mater list unless the clinical team believes that for a particular patient it would be more appropriate for that patient to attend another centre.
2. The patient’s interest and outcome is paramount and the patient is not disadvantaged in any way during the repatriation process.
3. In the event of a patient requesting to opt for a specific transplant centre, the medical team will supply the necessary information for the patient to make an informed decision. Once the patient has reached that decision his request will be upheld and all assistance will be provided.
4. The association between Newcastle and the Irish Transplant Programme with remain for the foreseeable future. The Newcastle contract is reviewed by the HSE on an annual basis.”
On the 3rd January 2008 the following correspondence was received from Mr Wood:
“I am happy with the accuracy of the statement you plan to report to your board and general membership relating to lung transplantation” Mr A.E. Wood, FRCSI, Director, National Heart Lung Transplant Programme.
Subsequent to the last NEC meeting the CFAI Transplant Committee formulated a strategy to endeavour to get the Mater and Newcastle teams together to address the concerns of CF patients and to assist in whatever way possible to increase the number of lung transplants particularly on CF patients. David Fitzgerald will meet with the CF Trust on 7th February and will discuss their strategy on lung transplantation.
St Vincent’s Hospital Update
On Friday 18th January 2008 Prof Drumm was interviewed on RTE Radio News at 1pm and stated that he was hoping to have vacated space in St Vincent’s in the next three to four months that will allow for the development of single rooms for an interim solution and then a further eight to nine months to complete the interim development. He also stated that “I think we could get an interim solution ahead of 2010 and I’m saying that we can get a superb solution by 2010.” On the same day I spoke directly with the Minister’s Private Secretary and expressed our concern in the time line for these interim solutions and proposed the option of locating a pre-fabricated unit for CF as an interim measure. On 21st January I received a reply from the Minister’s office stating that this option had been considered but that it was not a suitable option. I replied to this stating that our own expert advisers did not believe that this was the case and that our members will not accept the current proposed solution and are not prepared to wait another year for the interim solution to be put in place. The Minister’s office came back and confirmed that the head of HSE Estates and the HSE Architect had met with our technical advisor and that progress is being made on an interim solution. On the night of 25th January the HSE issued a Press Release prior to the Late Late Show (copy attached) bringing forward the refurbishment of St Mark’s Ward and St Camillas Ward. St Mark’s will provide a minimum of 6 single en suite rooms by May (possibly 7) and St Camillas should provide an additional 11 subject to detail design on a phased basis from July to September. The HSE have confirmed that they will cover the capital cost of this development. In conjunction with this our technical advisers have specified a pre fabricated structure that could be used as an alternative on the St Vincent’s site or on any other regional site.
Carl Rainey and I are meeting on a weekly basis with our technical advisor who is in turn in daily contact with the HSE.
Carl Rainey will liaise with Galway and give any assistance in progressing developments at University Hospital Galway. I will meet with Beaumont Hospital on 4th February and with the Cork consultants on 1st February. I will continue to assist the Cork & Kerry branches plus Build4Life in whatever way possible to deliver on their and the consultants requirements for CF facilities at Cork University Hospital. I have also communicated with Crumlin Hospital as they have now sent a letter of concern to Prof Drumm re their inpatient facilities. I have also requested an update from Temple Street regarding the progress on their project.
HSE Working Group
A letter and an email has been sent to the Chairperson of the HSE Working Group and copied to all members of the group requesting that the findings of this group be published within 2 weeks. The Minister’s Office has also been informed that this correspondence has taken place.
Fundraising
Year to date cumulative income (to the end of December 2007) stands as follows:
Branch Income € 351,827
Fundraising Income € 909,829
Other income € 187,533
Total YTD Income €1,449,189
Our corporate sponsorship has continued to grow we received the proceeds of the Irish Life Charity of the Year 2007 - €80,000 and a substantial donation from the trust fund of a high profile donor who requested to remain anonymous - €150,000 and requesting that the funds go towards our research fund.
A huge amount of work has been put in by the staff at CF House in getting merchandise and material out to branches and volunteers across the country.
The Annual CF Gala Ball took place on 26th January 2008. A special account has been opened in the name of the Association for the Shane Kinsella Fund with co-signatories from the representative of the Kinsella family and the Association.
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