CEO's Report to NEC - March 2008
This report covers activities from the 1st to 21st February 2008.
NEC Meeting 1st March 2008 – CEO’s Report
This report covers activities from the 1st to 21st February 2008.
Campaigns
Every Breath 2008 Campaign
Our CF Awareness billboards continue to be placed at key sites around the country when space comes available. By the 12th February CF billboards had been posted at 18 sites around the country. These included:
Cork Road Cashel – facing Cork
Cork Road Cashel – facing Cashel
Swords Road Santry – facing out
Swords Road Santry
Watergrasshill Cork
Ilac Centre Dublin
Benburb Street Dublin
Caple Street Dublin
Cork Road Urlingford
Dublin Road Carrickaron
Cavan/Dublin Road – facing Cavan
Dublin Road Cavan facing Cavan
Dublin Road Sligo
Edgeworthstown
Carrick-on-Suir – Pilltown
Ravensdale Road
Muckno Street Castleblayney
Media coverage has continued during January. A quick scan of news clippings between 1st & 18th February showed that cystic fibrosis was covered over 150 times in national and regional newspapers. We also had coverage on TV3 News and RTE1 & 2 News.
Audit
A meeting was held with the auditors on 18th February to review the audit carried out for the period ended 7th December 2007. The auditors had no major concerns or issues that required our attention. They were very happy with the quality of work since our new bookkeeper took over the accounts and commented that the audit process was very professionally co-ordinated by Helen Whitty. The one issue that was raised was the transfer of the title deeds of the building into the new company’s name. A letter has been sent to our solicitor requesting how we should proceed with this process. We will also require CF House to be valued prior to the next audit as it is over 3 years since this was last carried out.
Dāil
CEO was invited to attend the Dāil debate tabled by Dr James O’Reilly of Fine Gael on 5th February and was supported by the other opposition parties. Various members spoke including Deputies O’Reilly, Shater, Naughton, Hayes, and ŌCaolāin all in support of improving facilities and services for people with cystic fibrosis.
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.
St Vincent’s Hospital Update
David Crowley had continued meeting with the HSE and St Vincent’s architects. He has reported positive progress and expects work to start shortly on St Mark’s Ward. It is hoped that there will be a greater number of single ensuite rooms available than the 6 originally believed possible. The completion date for this is now believed to be June. The planned reconfiguration of St Camillus Ward is still on going. It was hoped the extra beds in this unit would be delivered on a phased basis but now to minimise hospital disturbance it is believed that they will now be delivered in a single phase. We have expressed our concerns to both the hospital and the HSE that the total number of beds will not meet the peak winter demands of CF patients. We have also recommended that the hospital should look at additional beds in a prefabricated structure and that the Association is prepared to fund or assist in funding these extra interim beds.
University Hospital Galway
Carl Rainey is liaising with the regional committee re interim facilities. CEO has written to the HSE requesting when the Respiratory Physician for adults will be appointed and requested that a locum be put in place in the interim. The replacement paediatrician is expected to take up her role shortly.
Cork University Hospital
The biggest concern that Dr Barry Plant has at present is that they still have 6.5 posts not filled between adult and paediatric services in Cork. They have not been able to get primary notification for these posts. The medical team requested the CEO to write to the CUH Network Manager concerning this and he has now told us to refer this back to Louise McMahon at the HSE National Hospitals Office. These posts were approved in 2007 and the medical team applied a number of times to have these posts filled to no avail during 2007. This issue was raised on 21st February by the medical team with the executive management of the hospital. Dr Plant expects to be given a date in March to present his statement of need to the hospital’s executive management. This will include a day centre and inpatient beds of 10 per 100 patients. He also stated that he would consult with all stakeholders prior to making this presentation. At the beginning of 2008 there were 110 adult PWCF’s attending CUH and they have been acquiring an additional 11 new patients a year on average over the past 7 years.
THE CFAI Clinical Registrar in CF has proven to be a great success and has given huge professional support to the other team members. Dr Plant reports that patients have reported that they now do not experience the same delays in being seen and has offered a great level of continuity to the service on offer. Dr Plant is requesting that CFAI support this programme again and extend the programme to a new Registrar from July 2008. The CF Medical team have now made formal research links with Dr F Shanahon Head of Medicine at Cork University and as a result will have access to labs at the university. CF medical team are involved in research in smoking in CF, reproductive health and CF, and hope to start in July research into inflammatory responses in CF.
Beaumont Hospital
Met with Prof McElvaney on 4th February. He explained that the hospital is developing a new day care / outpatient facility with the €2.5m that was allocated in the 2008 Budget. He would love to get a dedicated 10 bed unit in conjunction with this. We met with Brian Daly from the Construction Workers Heath Trust and discussed the possibility of providing a prefabricated structure. Prof McElvaney stated that he would take this offer to Hospital Management and come back to us. This was followed up again on the 14th February so see if there had been any feedback from hospital and there are no further developments to report.
Mid Western Regional Hospital Limerick
The main concerns in Limerick have been staff oriented rather than facility oriented. There is an immediate need for a Consultant Physician and Consultant Paediatrician both with particular interest in CF. These two posts were delayed due to the consultant contract negotiations. The post of CF nurse specialist has been dogged with controversy since 1994. Dr Mahony claims that there is now funding for four cystic fibrosis nurse specialists, two for the adult services and two for paediatric. These are currently issues around the existing two CF nurse specialists and nurse management appear to be moving her from CF duties to general ward duties without warning making a total mockery of the concept of continuity of care and the building of a multidisciplinary team.
HSE Working Group
No response has been received to our letter requesting the findings of the Working Group to be published.
Temple Street
Planning permission for the new CF outpatients unit will be received in April and construction will commence shortly thereafter. Funding will be in place by then and the total cost will be €3.1m. They are looking at developing in patient facilities also but there are concerns whether this will be permitted due to staffing issues.
Children’s Hospital Crumlin
No further communication has been received back from Crumlin to our letter dated 25th January concerning in patient facilities at the hospital. I have tried calling Dr Canny but he is currently out of the country.
Tallaght Hospital
The HSE working group recognised Tallaght as the interim National Referral Microbiology Laboratory. The Association is continuing to fund one scientist that has allowed Tallaght to continue offering a referral service to all CF Units in the country. The hospital has been generous in itself by carrying the cost of consumables which is not increasing due to the new pseudomonas serology test. Most of the lab equipment being used is either old or shared with Trinity. The hospital has space available to develop the lab now. The initial capital cost would be in the region of €300,000 and an exercise has been done by Prof Murphy whereby a developed centre would be operational cost neutral if current users of the service paid for the service at existing commercial rates. Currently they provide their services free to all CF centres. Would the board support a Fundraising Project to raise €300,000 to equip the CFAI National Reference Laboratory? Currently Tallaght now is the busiest microbiology reference facility in the country reviewing over 1000 isolates per year for identification of purported B. cepacia complex bacteria. They have also completed a National P. aeruginosa DNA typing project showing minimal evidence of cross infection in Irish CF centres and absence of the epidemic clones seen in other countries. Under the auspices of the CFAI Microbiology Reference Service an Irish Microbiology network has been established to educate and enhance quality assurance of Irish CF microbiology.
Drogheda
It has been confirmed that Dr Vaughan (paediatrician) will be leaving Drogheda and will be taking up a new consultants post at Crumlin. The Drogheda branch has written to the hospital requesting confirmation re the recruitment of replacement staff. The CEO has offered to write to the National Hospitals Office concerning this also.
Waterford
Dr Daz is in place as the Paediatric Respiratory Consultant and Dr Susan Foley has taken up the role as Respiratory Physician. We are trying to establish with the HSE whether Dr Foley will be looking after adult CF patients or whether a second consultant is still to be appointed. There is also concern that the CF nurse Ann Goggin will be leaving in June.
Attached to this report is information that was received from the Minister’s Office that was presented at the last meeting concerning medical posts filled with the 2006 budget funding.
I am still working with the Medical & Scientific Committee to get a better grasp on the total staff numbers to be filled as a result of the 2006 & 2007 budget awards. The staff audit is proving more difficult to finalise than expected.
Insurance
Our insurance cover is being reviewed and the renewal date for our new cover is 1st March 2008. With reference to the cover of collectors / volunteers previously all were covered for third party public liability but excluded participation risk. Under the new policy participation risk will be covered at an additional premium. It is important that all branches notify the office in advance of events and the number of participants they are expecting so that they are logged by the Association and the Insurance Company. Unless this happens there will be no participant cover. It is best to notify the office in writing or my email to Grace Barrett info@cfireland.ie
Fundraising
Year January fundraising income stands as follows:
Branch Income €6,210
Fundraising Income € 25,443
Other income €158,587
Total YTD Income €190,240
Non branch income from National Awareness Week has so far contributed €25,000.
The New York Marathon places that CFAI were allocated are fully subscribed at this stage. We still have places available for the Chicago Triathlon.
Newsletter
To go out week beginning March 3rd.
Annual Conference
All speakers have now been finalised and programme to go out with Newsletter. Rooms have been block booked for speakers and Officers.
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