CEO's Report to NEC - February 10, 2007
At the last NEC meeting it was decided that a copy of the CEO's Report that is made available to NEC Members should also be posted on our webpage. A special section will be created under Publications but until this is ready the latest copy will be available under News.
NEC Meeting 10th February 2007 – CEO’s Report
Media
There has been a flurry of press coverage over the last number of weeks and articles have appeared in the Irish Examiner (front page), Evening Herald, Irish Independent and Kilkenny People. Radio interviews were also carried on Cork FM103, KCLR 96FM, RTE the Afternoon Show, International Network News, Sam Smith Today FM, TV3 News, Dundalk Local Radio, and Irish Daily Mirror.
Medical Issues
Transplants
Serious concerns have been expressed by members regarding the statement that no new lung transplants are being referred to Newcastle. We wrote to Dr Egan last year requesting clarity on a number of issues and have just received his reply which states: “I am pleased to report that 2006 has been a very successful year in the context of lung and heart transplantation. A total number of 23 transplants have been performed, the largest to date since the inception of the programme in 1985. Nine of these were lung transplant recipients. Accordingly to date we have completed 12 lung transplants in total successfully.
The HSE have renegotiated the contract for 2007 in the context of a fully functional programme on the Mater site. Currently there are 7 cystic fibrosis patients waiting lung transplantation in Dublin.
We look forward to implementing the third phase of the Programme.
Kind regards,
This reply did not address the concerns expressed in our letter. Calls have been made to the Dept of Health and the HSE requesting clarification. The Dept of Health stated that no patient can be put at a disadvantage because of this arrangement. They say that the Newcastle contract is now handled by the HSE and a meeting has been requested with the HSE Network Manager responsible for the Newcastle contract and this is to take place on February 12th.
St Vincent’s Hospital Update
A meeting was held between the HSE, the hospital management, staff and the Association on January 12th. The hospital has met with the National Director of Hospitals regarding the unit and there is verbal agreement that the unit is going ahead and will be part of the 2007 Capital Plan. The hospital submitted specifications to the HSE on October 24th and received a reply on December 12th. The new building will include a limited number of beds between 20 to 40 beds and will include day care and inpatient facilities. The final plan however still needs to be signed of by the HSE architects. An interim revamp and expansion of St Paul’s Ward is to begin in March with the day ward expanding into St Mark’s Ward. The hospital claimed that the new A&E now offers better isolation than 2 yrs ago, though still not ideal. In summary HSE confident project will commence in 2007.
New National Children’s Hospital
The Association issued a statement as follows concerning the controversy around the construction of the new National Children’s Hospital. It read as follows: “The Cystic Fibrosis Association of Ireland is dismayed by the current debate regarding the location of the new National Children’s Hospital. At present all three hospitals, Temple St., Tallaght and Crumlin look after children with Cystic Fibrosis (CF). The Pollock Report published in 2005 and the HSE Working Group Report on CF, due to be published shortly, both recognise the serious lack of modern facilities in both Temple St., and Crumlin.
Our view is that a new hospital is urgently required for children with CF and its location is the least important of the issues involved. We do not care where it is located, what is much more important is that we do not miss this opportunity to now proceed and build a modern world class hospital that will benefit people with CF and help prolong their lives.
A meeting was recently called by Children in Hospital Ireland to allow interested parties meet with the HSE new hospital Transition Consultants (RKW) and representatives of the HSE Transition Team. These consultants are preparing a High Level Framework Brief on everything that will be required within the new hospital. These consultants are not revisiting the decision to build on the selected site. They can only recommend against the site if the facilities required will not fit on the existing site. It has been greatly stressed by the Minister, Department, HSE, Consultants, Task and Transition Groups throughout all the stages of the process that international best practice is being used to benchmark proposed facilities for the new hospital. During this meeting is was made known that cystic fibrosis patients must have single room ensuite facilities particularly when the consultants mentioned that Manchester’s new children’s hospital only calculated that 50% of the total beds be single rooms.
HSE Working Group
We are still waiting the release of the HSE Report. The Chairperson of the Group restated that the report is imminent and the only delay was secretarial. We continue to maintain pressure on the HSE to publish this report. We carried out a survey of all hospitals that were allocated funding for staff in January and the current position can be summarised as follows:
| Hospital | # positions allocated | # positions in place | # positions advertised | # waiting to be advertised |
|---|---|---|---|---|
| Beaumont | 7.25 | 3 | 0 | 4.25 |
| Temple Street | 3.5 | 2.5 | 0 | 1 |
| St Vincent’s | 13.5 | 2 | 8.5 | 3 |
| Crumlin | 8 | 0 | 2 | 6 |
| Tallaght | 4.1 | 1 | 0 | 3.1 |
| Cork (adult & paed) | 8.5 | 2.5 | 0 | 6 |
| Galway | 2.5 | 0 | 0 | 2.5 |
| Limerick | 8 | 0 | 0 | 8 |
| Waterford | 2 | 0 | 1 | 1 |
| Total | 57.35 | 11 | 11.5 | 34.85 |
| Additional projects | Funding allocated | Funding received | ||
| Organ Procurement review | Yes | Yes | ||
| CF Registry | Yes | No |
The delay in filling positions is directly related to the restrictions placed on hospitals to meet their financial and staff head count budgets. This fact was the main thrust of the Associations recent presentation to the Joint Oireachtas Committee on Health.
Joint Oireachtas Committee on Health
A delegation consisting of our Chairperson – Mary Lane Heneghan, Vice Chairperson – Carl Rainey, PWCF Representative – Rory Tallon, MSC Representative – Dr Gallagher, and CEO addressed the Committee on January 18th. The format of the meeting was a short address by the CEO followed by a questions and answers session from members of the Committee. A copy of the presentation is available on our website under News. A full transcript is available on the Oireachtas website by following the link http://debates.oireachtas.ie/DDebate.aspx?F=HEJ20070118.xml&Node=H4&Page=3
In summing up the meeting the Chairperson of the Joint Oireachtas made the following statement “…..it is evident why the public is so annoyed that services are not apparent on the ground in spite of the huge increase in funding for the health service. This is the second example of this in five weeks. We pledge to pursue the issue and we will make contact with the witnesses following the meeting with Professor Drumm. I thank the witnesses for their presentation.”
On 31st January a statement was released by the Department of Health giving sanction to the HSE to increase its official employment ceiling. This included posts to match new services development funding provided in 2006.
Internal Review
The Memorandum and Articles of Association along with postal ballot papers have been sent out to all members. The postal ballot option is open to all members who cannot attend the ECM in March and wish to vote on the change of the governance of the Association.
National Conference
The 2007 National Congress will be held in the Corrib Great Southern Hotel, Galway 23-25th March 2007. The Programme for the conference has been sent out with the Annual Newsletter.
Fundraising
Year to date cumulative income (to the end of December) stands as follows:
Branch Income €523,110
Fundraising Income €786,247
Other income €130,660
Research
Research contract with Dr McKone has now been signed and the first payment has been made. The project is entitled “Genetic modifiers of the cystic fibrosis phenotype”. Dr McKone’s lay abstract is as follows: Some patients with cystic fibrosis (CF) have very severe disease while others can have relatively mild disease, even if they have the same CF genotype. This suggests that disease severity is influenced by genes or environmental factors that influence CF lung function, irrespective of CF genotype. The purpose of this proposal is to consolidate an existing database of clinical and genetic information from over 400 Irish CF patients from CF clinics in Dublin and Belfast. DNA will be collected from CF patients as well as detailed clinical information regarding lung function, nutritional status and exposure to infection. In collaboration with the University of Washington in Seattle and using web-based genomic resources, we plan to carry out large-scale genetic association studies in over 700 CF patients to identify novel genes that influence CF lung function. This research may lead to new information about why certain patients get severe CF lung disease and others do not. We anticipate that this information could lead to new targets for future CF therapies.
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