CFAI Annual Report 2010

Cystic Fibrosis

Association of Ireland ANNUAL REPORT 2009/10

Progress & Plans

About Cystic Fibrosis in Ireland Cystic Fibrosis (CF) is a life threatening, inherited disease that primarily affects the lungs and the digestive system. This lifelong condition usually becomes more severe with age. A build up of mucus can make it difficult to clear bacteria and leads to cycles of lung infections and inflammation, which can eventually lead to damage of the lungs. The symptoms and severity of CF vary from person to person. Ireland has the highest incidence of CF in the world with almost 3 in every 10,000 people in Ireland with the disease and 1 in 19 individuals classed as carriers. The incidence of CF in Ireland is almost 4 times the average rate in other EU countries and the United States.1 There is no cure for CF. Life expectancy has increased steadily over the past 20 years thanks to research and improved management of the disease. The latest figures from 2008 show the following: Mean age of death of people with CF is 25 years, though projected survival can be significantly greater2 51.5% of CF Patients are older than 18 years3 About the Cystic Fibrosis Association of Ireland (CFAI) The CFAI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country and our members are mostly parents and people with CF. The CFAI is committed to working to improve CF services in Ireland and our recent progress includes: Lobbying to ensure that the new national adult CF centre in St Vincent’s University Hospital will be completed Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Cork and Limerick Hospitals Funding research Campaigning to improve the rate of double lung transplantation in Ireland Providing advice and expertise

1 Farrell PM. Journal of Cystic Fibrosis 2008 Sep: 7 (5) 450-453 which revealed a mean prevalence of 0.737/10,000 in the 27 EU countries which is similar to the value of 0.797 in the United States and only one outlier, namely the Republic of Ireland at 2.98/10,000 population. 2 Foley, L. Director of the Cystic Fibrosis Registry of Ireland in E-mail to Philip Watt, October 2009. Note: Projected survival age is likely to be higher than this figure as mean age of death does not of course take into account living patients. Research on this and comparison with other countries is being undertaken by UCD but has not been published. 3 Foley, L. Director of the Cystic Fibrosis Registry of Ireland in E-mail to Philip Watt, October 2009.

Contents Chairperson’s Foreword Paul Higgins, National Chairperson, CFAI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Section 1

Overview – Progress and Challenges in 2009/10 Philip Watt, CEO, CFAI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Section 2

Update on CF Centres in Ireland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Section 3

Key Policy Developments in 2009/10 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Section 4

Advocacy, Services, Awareness and Fundraising . . . . . . . . . . . 19

Section 5 Report from the CFAI Annual Conference 2010 . . . . . . . . . . . . . . 23 Annex 1

Programme of Work Progress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Annex 2 Annex 3

National Executive Council and Staff 2009-2010 . . . . . . . . . . . . . 37 Transplant and Organ Donation Issue . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Information on Annual Report 2009/10, Progress & Plans This is the Annual Report of the Cystic Fibrosis Association of Ireland (CFAI) for 2009/10. The purpose of this summary is to provide an overview of the work of the CFAI, including progress in meeting our current programme of work The CFAI is a voluntary, non-profitable, charitable organisation. It was set up in 1963. The CFAI seeks to improve services, increase knowledge and awareness of Cystic Fibrosis (CF), and provide advice and support to people with CF and their families. Charity Number: CHY6350

Chairperson’s Foreword

Chairperson’s Foreword

I was deeply honoured to be elected National Chairperson of the Association and I would like to thank the Directors for having faith in me to fill the role. I would like to thank the Directors and shadow Directors also for their support and excellent attendance at the NEC meetings during the year. The work and commitment of the Directors can sometimes be taken for granted and their continued participation ensures that our Branches have a strong and representative voice at national level; this representation is a vital component of the Association. The past year has also been the first full year for Philip Watt as CEO. I feel the Association has been fortunate to have Philip as CEO as his experience, knowledge and understanding within the voluntary sector has proved to be hugely valuable in providing a sound and innovative structure for the future of the CFAI. I want to express my appreciation to him for his willing support and openness to me during the year. Three subcommittees have already been set up with more planned for this year, and these are working to ensure that the Association is progressing as we need it to. I want to urge members to get involved in subcommittees to ensure all regions are represented. During the year a number of Regional Meetings were held around the country for members and staff to get to know each other, and to listen to and understand each others roles within the Association. The meetings were well attended and provided an excellent platform

1

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

for exchanging views. I want to thank everyone involved in organising the meeting and express the hope that they will continue into the future.

the future. It will be difficult, but I know that with the calibre of the people within the Association, we can make it happen and we will succeed.

Over the last few years the CFAI has now become a more publicly vocal advocate for the rights of People with Cystic Fibrosis (PWCF) in the eyes of the media and the general public. This has resulted in better awareness of our situation and has put the cause of PWCF into the spotlight politically, within the HSE and with local hospital management. This was reflected during the year with the role that the CFAI played during the Swine Flu Epidemic, both in consultation and in providing guidelines, through the Medical and Scientific Council on behalf of PWCF and their families.

Let me express my gratitude to the Adult Group for their support, commitment and work during the year, they are innovative and very committed. The staff at CF house is a wonderful group of people, it is when you are working close with them that you can observe and appreciate their commitment and efforts. I want to express my deep appreciation to them on your behalf. The Medical and Scientific Council have demonstrated their commitment and expertise in supporting and forwarding the cause of PWCF, not alone within CFAI but locally in their own areas, and I want to thank them for their continued commitment.

We have come through a tough year; however, we have had some noticeable improvements and initiatives. The opening of units in Galway University Hospital and Temple Street Hospital were very welcome and uplifting. Ongoing developments in St. Vincent’s University Hospital, Limerick Regional Hospital, Castlebar General Hospital, Cork University Hospital and Our Lady’s Children’s Hospital, Crumlin show that we are making progress and that the work of the local Branches is paying off.

Finally, my fellow Officers and Directors, I am privileged and proud to be able to share a cause and workload with you and I look forward to seeing our common goals fulfilled into the future. Thank you indeed. Paul Higgins National Chairperson, CFAI.

We are strong in structure and resolve, of that we can be sure. We are going to be challenged financially into the short and medium terms. Progress going forward will be dependent on finance and we must now remain innovative and focused in our fundraising efforts, both nationally and locally, to secure the facilities we need into

2

01

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Section 1

Overview – Progress and Challenges in 2009/10 2009/2010 is the period that may well be regarded as one of the most important in the history of the Cystic Fibrosis Association of Ireland (CFAI) because of the progress made towards a more comprehensive framework of Cystic Fibrosis (CF) services, particularly through the publication of a Health Service Executive (HSE) blueprint for CF services report.

There is emerging evidence that the investment in CF services, particularly in specialised health staff that make up multidisciplinary teams in designated CF Centres around the country, is having a direct impact on better patient services and care in Ireland. However, it is also evident that the progress made remains piecemeal and there are still major gaps and weaknesses in the implementation of agreed government policy in respect of CF services. In short, CF services in Ireland are still far behind European standards of care. The context in which we work is increasingly challenging. The continued downturn in the economy, progressing rapidly into the present economic crisis, has and will continue to have an impact on all public services for many years to come, including those health services related to CF. Of particular concern includes: The likelihood that funding for new capital projects related to CF, other than those already approved, will most likely be entirely dependent on voluntary fundraising The embargo on recruitment within the health services will have a cumulative effect on the ability of the HSE to deliver services – we are already seeing the non-replacement of some key staff in CF multidisciplinary teams, such as physiotherapists, social workers and psychologists

The cutbacks in social welfare support and additional charges for people with a disability, including those with CF It is unacceptable that in 2010 some CF patients remain in multi-bed wards or in singlebed units that do not have adequate en-suite facilities to prevent cross infection. It is equally unacceptable that, in some hospitals, CF patients are exposed to unnecessary risks because of the lack of, or the inappropriate location of, dedicated CF out-patient facilities. As a result of the welcome trend that CF patients are now living longer and there are now slightly more adults than young people with CF, there is a concomitant increased need for CF adult services throughout Ireland. There has been a historic deficit in adult CF services, which was highlighted by the campaign for new CF facilities in St Vincent’s University Hospital in 2009/10, and which continues to be highlighted in other CF Centres in Ireland, including the Mid-Western Regional Hospital in Limerick and Waterford Regional Hospital. The HSE have promised that the new en-suite in-patient and dedicated out-patient facilities in St Vincent’s University Hospital will be completed by 2011. The recent delay in the St Vincent’s CF Unit is to be regretted but is primarily the consequence of difficulties in the building industry rather than the fault of hospital management with the original favoured tenderer unable to fulfil their commitments. The CFAI will continue to insist that the new Unit will be built

4 Health Service Executive, 2009. Services for People with Cystic Fibrosis in Ireland. Conclusions of a Working Group established by the HSE. 5 These standards of care are set out in Kerem E, Conway S, Elborn S, Heirerman H. Standards of Care for Patients with Cystic Fibrosis: A European Consensus. Journal of Cystic Fibrosis, March 2005; 4 (1):p 7-26

4

Section 1

Overview – Progress and Challenges in 2009/10

on schedule and will have the 34-bed in-patient capacity recommended by the CF Medical and Scientific Committee.

among other issues, develop Key Performance Indicators (KPI) for all CF Centres in Ireland. We have been given assurances that such a group will be established and this is to be welcomed.

It is also increasingly clear that both transplantation and organ donation needs a complete overhaul in Ireland. Organ donation awareness strategies in Ireland remain piecemeal and reliant on NGO’s. In almost all industrial countries, organ donor awareness is the responsibility of national and local governments working in partnership with NGOs. This should be the position in Ireland and a National Database of organ donors needs to be developed as a matter of urgency. The CFAI will continue to work closely with the Organ Donor Network to pursue these priorities. The rate of double lung transplantation in Ireland remains totally unacceptable but there are signs of recent improvements. Until April 2010 there had been only two double lung transplants undertaken in Ireland since the commencement of the lung transplant programme. However, by September 2010 there have been a total of five double lung transplants undertaken. There is an urgent need for two dedicated lung transplant surgeons in Ireland to deal with the backlog of 50 people awaiting lung transplants, including the 30 or so with CF. The Human Tissue Bill, when enacted, will put organ donation and transplantation on a sound legislative footing for the first time. However, this Bill is currently languishing in the Oireachtas and appears to have been given little political priority. In its Corporate Plan, the HSE has promised that a Transplant and Organ Donation Office will be established in 2010, which is an important step in the right direction in monitoring and co-ordinating transplant activity in Ireland. However, it remains unclear if this unit will be given sufficient powers or resources to undertake its important tasks. The CFAI will seek to ensure that the new Office complies with the spirit as well as the letter of the EU Directive on Quality and Safety of Organs for Transplantation. The CFAI has called on the Government to establish a CF Reference Group which would,

5

There have been important strides made in 2009. Most significant, was the publication of the long awaited HSE CF Services Report in October 2009.4 This HSE report in large part endorsed the vision and approach set out in the ‘Pollock report’ commissioned by the CFAI in 2005, which provides the blueprint for: Dedicated CF Centres in Ireland that are in effect ‘Centres of Excellence’ The recognition that CF can only be managed effectively through multidisciplinary teams that includes consultants, doctors, specialised CF nurses, physiotherapists, nutritionists, psychologists and social workers The critical importance of preventing cross infection based on international standards, particularly in respect of Pseudomonas and B.cepacia, but also MRSA and other infections, which some hospitals have struggled to prevent recurrence The introduction of screening for CF for of all newborn babies as part of the existing Newborn Screening Programme The CFAI is actively involved in the HSE steering group to extend the existing Newborn Screening Programme to include CF for the first time as part of the ‘heel prick test’. A further ‘sweat test’ is used to confirm a positive result for CF. Three cases a week of CF may remain undetected because of the absence of CF screening. There is a growing body of evidence to prove that the early detection of CF can make a considerable difference to the long-term management of CF and life expectancy. The CFAI welcomes the commitment to bring in screening by the end of 2010, but is concerned about recent delays that may result in a delayed screening programme introduction date. Within the CFAI, a key development in 2009 has been the evolution of a more co-ordinated regional approach to developing CF services. While it is unfair to focus on just one region, the

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

emergence of TLC4CF, which is a combination of the Tipperary, Limerick and Clare branches of the CFAI, has been an exciting new development. It builds on previous work to develop a regional approach in Cork/Kerry and in Galway and, in more recent months, in the Drogheda/NE region. This is clearly the way forward for the Association.

to the dedication and counsel of our National Chairperson, Paul Higgins, and the Officers and Board members (see Annex 2). I would like to thank the excellent staff team of the CFAI and this report is very much a reflection of a team effort.

The well-attended Regional Meetings that were organised in 2009/10 demonstrated once again the extent of commitment of local branch members to improving CF services in Ireland. Meetings were held in Kells, Kilkenny, Limerick, Cork and Castlebar. The cross border and transnational dimension is also an increasingly important feature of our work. We hope to further develop linkages with our colleagues in Belfast and in Great Britain through the CF Trust, the Centre for Cross Border Studies and with equivalent bodies in mainland Europe in 2010.

Philip Watt CEO CFAI

The National Awareness ‘65 Roses week’ was a great success in April 2010 thanks to the support of the branches, the new CF pin designed by Irish artist Paul D’Arcy and the advertising space donated by JC Decaux. The week was launched by Minister Mary White at our revamped Annual Conference in Kilkenny that was attended by over 200 people and which was sponsored by Baxter Health. We were also delighted when Paul McGrath accepted our invitation to become patron of the CFAI in April 2010. Since becoming CEO of the CFAI in May 2009, I have been struck time and time again by the generosity, the imagination and energy of our branches, parents and friends. This assistance will be needed as it was never before if we are to maintain the support and the funding we provide to CF facilities around the country. In this context, we will sorely miss people like John O’Hanlon, former Chair of the Midlands Branch, who gave 30 years of active service to the CFAI and who sadly passed away this year, as did Linda Foley who gave many excellent years of service to the CF Registry. On a personal note, I would like to thank the Board of the CFAI, in particular to pay tribute

6

02

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Section 2

Update on CF Centres in Ireland The following is an update on progress in developing CF Services around the country. The core of this report was provided to the Public Accounts Committee by the HSE in March 2010.

While there is much useful information in the HSE memorandum to the Public Accounts Committee, there are also gaps and the need for further additional comment. This is provided by the CFAI [in brackets] for the purposes of this report.

1. National Adult Referral Centre – St. Vincent’s University Hospital (designated by Minister for Health and Children in 2006)

treatment rooms with en-suite sanitary facilities. Tenders for this development are currently under consideration, which should result in the signing of a contract for construction imminently. It is estimated that the construction, equipping and commissioning of this block will take approximately 18 months and the new facility should be operational in autumn 2011

[CFAI Comment: In early 2009 the CFAI Ambulatory care for CF patients at St.Vincent’s campaigned to ensure that the new ward block in St Vincent’s University Hospital would is provided in the new building opened in proceed. The high profile campaign, which 2006. included the support of CF advocates, in Eight new single en-suite rooms (St. particular Orla Tinsley, successfully resulted Christopher’s Ward) for the in-patient in assurances from the Minister for Health and treatment of CF were opened at the hospital Children that the new facility, which will be in August 2008. This brings the total level of part of a five-storey block, would be built and in-patient accommodation for the treatment operational by 2011. This is greatly welcomed of respiratory patients (including people by the Association, although the completion with CF) at the hospital to 63 beds. date has recently been moved to ‘early 2012’, A new ward block to replace existing which is a disappointment. accommodation is being developed at the hospital. This facility will provide single The CFAI regrets the delay in the new ward room en-suite in-patient accommodation block announced in June 2010 but notes that (100 rooms) and a dedicated day unit for this is the consequence of the preferred builder people with CF, including 10 single day being unable to meet the requirements of the Tender due to the present crisis in the building industry, which cannot be blamed on the hospital management. The CFAI has established a patient liaison committee to work with the hospital that has resulted in a good working relationship, including regular meetings with hospital management. The CFAI supports the position of the Medical and Scientific Committee, which has called for a 34 bed in-patient unit in Artists impression of the New Ward Block at St Vincent’s the Centre.] University Hospital

8

Section 2

2. Beaumont Hospital

Capital funding has been provided for the development of out-patient facilities for patients with CF treated at Beaumont Hospital. The project is in two phases and the first phase (decanting) was completed at the end of 2009. The second phase commences in the week beginning 22nd February with a further service decant. The refurbishment will commence in week beginning 8th March for 16 weeks (completion date summer 2010). This out-patient accommodation comprises a physiotherapy treatment area, an area for pulmonary function testing, consulting rooms for medical, dietetic, social work and nurse specialist consulting. The unit will also have air handling facilities to minimise cross infection. HSE funding enabled the construction of a three-storey building consisting of two floors each of 14 single rooms, an 8 bed HDU and two additional ICU rooms (within existing ICU). Single room accommodation has been agreed as a requirement for the in-patient treatment of patients with CF.

[CFAI Comment: The CFAI continues to work closely with the multidisciplinary team in Beaumont Hospital and welcomes the support provided by the HSE, supplemented significantly by further funding from parents and friends, including CF Hopesource.]

Update on CF Centres in Ireland

The hospital has requested capital support for this development (to €180k) from the HSE, and has recently submitted details to clarify their request, which is now being examined. There is no provision, however, in the current Capital Plan for such support. It is important to note that this service will integrate with the National Paediatric Hospital CF service when the new children’s hospital is brought into use in accordance with current plans. [CFAI Comment: The CFAI is committing €750,000 towards the new four bed isolation unit which will be opened in September 2010. The funding of the new unit will be drawn from a range of sources including in particular the Shane Kinsella Fund and the ‘One in a Thousand’ initiative. The funding will have a significant impact on the quality of care in Crumlin Hospital and the CFAI continues to work very closely with the multidisciplinary team and hospital management.]

4. Adelaide & Meath Incorporating the National Children’s Hospital (AMNCH), Tallaght

Infrastructure at the National Children’s Hospital at Tallaght is appropriate for the separation policy which is in place at the hospital, particularly the single room accommodation.

3. National Paediatric Referral Centre – [CFAI Comment: The CFAI works closely with the Our Lady’s Children’s Hospital, multidisciplinary team in Tallaght and supports Crumlin (designated by Minister the salary of a researcher, Jonathan Collins for Health and Children in 2006) Ambulatory patient care is provided in the Medical Tower where a respiratory laboratory, consultation rooms, access to clinical nurse specialists, ‘drop-in’ clinics, liaison services, multidisciplinary team, physiotherapy suite etc. is provided.

The HSE was advised by Our Lady’s Children’s Hospital in 2008 of its intention to develop a four bed isolation facility for the in-patient accommodation of respiratory patients; including those with CF. The hospital indicated that charitable support is being provided by the CFAI to advance this project.

9

in the Microbiology Department. The CFAI continues to support plans for the development of a new microbiology centre based in the hospital, which is already recognised for its important work on Pseudomonas and B.cepacia.]

5. Mid-Western Regional Hospital (MWRH) Limerick

With regard to infrastructure, the ‘Pollock Report’ states “Limerick, has an excellent paediatric unit within a modern hospital. Fifty percent of the beds are in single rooms

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

with sanitary facilities and good facilities for mothers to ‘room in’.” Charitable funding enabled the creation of three single en-suite rooms for use by people with CF. These rooms were further enhanced with improved TV/DVD and internet access. These rooms may from time to time be used for other patients.

[CFAI Comment: The CFAI works very closely with the CUH multidisciplinary team and with the Branches in Cork, chaired by Paul Higgins (National Chairperson of the CFAI), and with Joe Browne (Chair of Build4Life) in the development of facilities in Cork and in supporting the employment of a Clinical Registrar.]

[CFAI Comment: While there has been important recent progress in Limerick thanks to the work of the CFAI Branches in Tipperary, Limerick and Clare and through the work of the multidisciplinary team, much remains to be done to improve services. Of particular importance are the services for adults with CF where there has been a historical deficit in Limerick, and which is not acknowledged in the above report.

Joe Browne and Build4Life charity continues to undertake valuable fundraising for Cork University Hospital.

TLC4CF is an exciting new collaboration between the three CFAI Branches in the area. (see page 11) CFAI is committed to providing €1.4 million towards a new adult in-patient facility in Limerick funded through TLC4CF and with support from the CFAI National Office. It is hoped that a total of €3.5 million will eventually be raised towards dedicated in-patient and out-patient facilities in Limerick.]

6. Cork University Hospital (CUH)

The hospital has agreed in principle that new facilities for adult patients with CF are to be developed on the CUH main campus. Plans are developed to provide an interim day care facility with the support of charitable funding (CFAI and Build4life; friends and family of CF patients in Cork and Kerry).

7. University Hospital Galway (UHG) [And Mayo Hospital, Castlebar and Sligo General Hospital]

An extension to St. Anthony’s ward providing three en-suite rooms for adult CF patients opened in October 2009. Pediatric patients continue to be accommodated in the Pediatrics department where there are three new en-suite rooms. This is funded by the CFAI. The CFAI Mayo Branch has offered to fundraise the capital cost to provide an ambulatory and day facility for all patients

Hospital management is working closely with the adult CF team to find a location for a 10+1 model of in-patient single room isolation beds for CF patients. This proposal is supported by the Executive Management Board (EMB) and part of the Statement of Need for Adult CF Care at CUH, which was presented to the EMB in June 2009. A project team has been established to progress the project, planning permission has been secured and the tendering process has commenced. In addition, the respiratory ward and associated isolation rooms are being progressed in tandem with the CUH Site Development Plan.

Pictured at the opening of the dedicated Cystic Fibrosis rooms in University Hospital Galway on Wednesday 30 September 2009 were; Marie Brennan, Secretary Galway CF, Chair Mary Lane Heneghan, Galway CF Branch, Brigid Howley, General Manager Galway Hospital, Jarlath Feeney former Chairman Galway CF Branch and Michele Feeney Assistant Ward Sister, St. Anthony’s Ward.

10

Section 2

Update on CF Centres in Ireland

Focus on TLC4CF The following is an example of what can be achieved when local branches work together TLC4CF was founded by friends and family of PWCF in Tipperary, Limerick and Clare. They are a Regional Branch of the CFAI, dedicated to improving services for PWCF living in the Mid-West.

or make donations to raise vital funds for this worthy cause.

Dr. Michael Mahony, Paediatric Consultant at MWRH stated at the launch “There is an urgent need for improved Cystic Fibrosis facilities TLC4CF have a number of targets to reach over in the Mid-West region so that patients can the next few years: be segregated with the risk of cross infection To improve existing inadequate facilities for greatly reduced. These facilities, which TLC4CF PWCF attending the MWRH, Limerick, which are fundraising for, will help improve the services Tipperary, Limerick and Clare (as quality of care, the ease of access of care, and well as some patients from Kerry) provide resources that will allow patients to be treated in isolation. This can only translate into To construct a specialised CF out-patients better long-term outcomes for people with this unit with five treatment rooms potentially life-threatening disease.” To provide a dedicated CF in-patient unit with nine en-suite rooms would dramatically reduce the risk of CF patients acquiring lifethreatening cross infections To lobby for the recommended number of staff to care for PWCF To bring CF treatment at MWRH in-line with European standards To increase general awareness of CF in the region and the issues surrounding the condition To create awareness about Genetic Screening to possible carriers of the gene This capital project will cost in the region of €3.5 million, and TLC4CF are appealing to organisations, schools, businesses, clubs and individuals to organise fundraising events

11

After a recent meeting between TLC4CF and Minister for Health and Children, Mary Harney, TD on CF plans for Limerick Hospital. L-R Timmy Dooley, TD, Clare; Liam O’Kelly, TLC4CF; Dr Michael Mahoney, Mid-West Hospital, Limerick; Linda Drennan, TLC4CF; Owen Kirby, TLC4CF; Caitriona McDonagh, TLC4CF; Marcella Clancy, TLC4CF; Philip Watt, CFAI; Tony Killeen, TD, Clare and Minister of Defence

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

with CF (adults and children) so that they can access physiotherapy, dietetic and social work services in one dedicated area. It also provides a dedicated location where assessment of acute illness can take place and a meeting room will also be provided for parents and members of the CFAI. [CFAI Comment: The developments in UHG are in large part a result of the work of the CFAI Branch, in particular due to the efforts of Jarlath Feeney and Mary Lane Heneghan. The Galway Branch and the CFAI National Office have contributed €438,000 towards the new facilities and new lung function equipment in Galway and works closely with the multidisciplinary team and hospital management there. The facilities in Castlebar are important in their own right and should not simply be seen as an adjunct to Galway. A significant effort has recently been made by a new CF Hospital Group in Mayo to fundraise for improved CF Services, which is to be welcomed.]

8. Children’s University Hospital, Temple Street

(this service will integrate with the National Paediatric Hospital CF service when all such services amalgamate on the site of the Mater Hospital) The Hospital is currently developing a dedicated respiratory unit which will be a selfcontained floor for the ambulant care of CF and respiratory patients. It will include a new respiratory lab, treatment room, consulting rooms and walk-in access to Clinical Nurse Specialists. This unit is under construction and is due to be finished in February 2010. [CFAI Comment: The new dedicated respiratory unit in Temple Street Hospital opened in March 2010. The new unit is thanks to the efforts Denise Fitzgerald, the CEO of the Fundraising Office at Temple St and the vision of Dr. Dubhfeasa Slattery, Consultant Paediatric Respiratory Physician at Temple Street, Friends First and Hopesource (a local CF Charity). The CFAI will be contributing funding towards equipment for the Unit arising from Paul McGarth’s Golf Classic that was held in July 2010. Again, while the HSE continue to provide important funding for CF services in Temple Street, it is

Top: Official opening of the new respiratory unit at Temple Street Hospital in March 2010. L-R: Denise Fitzgerald, CEO of the Fundraising Office at Temple St; Mr Justice Peter Kelly, Chair of the Board, and the CEO of Temple St Hospital; Dr. Dubhfeasa Slattery, Consultant Paediatric Respiratory Physician at Temple St; Orla Tinsley, Journalist and CF Activist. Middle: Ronan Cahill (PWCF) and the Patron of the CFAI, Paul McGrath; Bottom: Former Ireland rugby international Shane Byrne tees up a ball for Ronan as Johnny Giles and Paul McGrath look on. Paul held a Golf Classic in July 2010 to raise funds for Temple Street Hospital. (Thanks to the Irish Independent and Garry O’Neill, the photographer, for permission to reproduce these pictures)

12

Section 2

Update on CF Centres in Ireland

disappointing they were not in a position to fund the capital funding for the Unit and the project has been delayed as a result. This new unit is vital for children with CF in Ireland and will be in operation for at least 4-5 years, and possibly more, until the new National Children’s Hospital is completed.]

The CF team there are also highly concerned about the current deficiencies in paediatric CF services, particularly the lack of en-suite rooms and a dedicated examination room. The key components identified for developing a limited adult service in the short-term are provision of a registrar and day ward/drop-in ward. Single en-suite rooms are needed both for adult and paediatric PWCF. The CFAI is committed to working closely with the CF team and hospital management in WRH to create more visibility to these issues and to develop a strategy to overcome the current limitations in services for PWCF in this region.]

9. Our Lady of Lourdes Hospital, Drogheda

A paediatric clinic is held weekly, with access to dietician and pulmonary function services. This service is provided in a dedicated space which allows for the segregation of people with CF based on their microbiological status.

[CFAI Comment: The out-patient and in-patient facilities need to be upgraded in Drogheda Hospital. The key priority in the first instance is the need for a dedicated out-patient facility. There is also a need to have a full-time CF nurse as part of the multidisciplinary team. The CFAI is working closely with hospital management, staff and the local CF Branches in the North East to support the improvement of services in the hospital. We are optimistic on the prospects of developing a new out-patient facility with support from the CFAI in 2011.]

10. Waterford Regional Hospital

[CFAI Comment: There is unfortunately no mention of plans to improve facilities in Waterford Regional Hospital through capital infrastructure in the HSE Report to the Public Accounts Committee. Staffing levels across multiple disciplines in adult CF care in WRH are far from adequate. For example, there is currently no designated Psychologist, Social Worker or dedicated Microbiology team member specific for CF care. Of vital need for the provision of adult care is the appointment of a Specialist Registrar. The lack of infrastructure (with particular reference to the absence of en-suite rooms and a dedicated day ward/drop-in ward) is also hindering the development of a safe and effective adult CF service.

13

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

14

03

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Section 3

Key Policy Developments in 2009/10

January–April 2009: ‘The St. Vincent’s Campaign’

May 2009: Newborn Screening for Cystic Fibrosis Announcement

On Monday 6th April, Mary Harney, T.D. Minister for Health and Children announced that the new CF facilities in St Vincent’s University Hospital would proceed and would be operational in 2011:

The history of including CF in newborn screening has been a long and winding road. A Working Group, which was first established as long ago as 1999, reported in 2004 about the extension of newborn screening to include CF. There was unfortunately no further action by the Department or the HSE until the Minister’s announcement in 2009.

Orla Tinsley’s appearance on the Late-Late Show on Friday 3rd April 2009 probably had more impact than any other media event in relation to CF in Ireland. The appearance was the highpoint of an intensive CFAI media campaign to ensure the building of the new St. Vincent’s in-patient and out-patient facility proceeded as planned.

‘The HSE confirmed this evening that the treatment of patients with Cystic Fibrosis remains a key priority and that it is continuing to work closely with St Vincent’s Hospital to enhance accommodation at the hospital for people with CF. The downturn in the economy means the HSE is facing significant financial challenges and as a result has had to reduce its Capital Plan for this year by 26%. This has naturally impacted on the ability to deliver on new facilities to the original timescales. Projects which were already under contract, prior to this cut, are proceeding as planned. The funding for the new ward block in St Vincent’s is currently allocated under the HSE’s proposed Capital Plan for 2011. Despite the current economic challenges the HSE is committed to delivering facilities for the treatment of CF patients as quickly as possible’.

In May 2009 (at the CFAI Annual Conference in Cork), Minister for Foreign Affairs and TD for Cork, Mr Micheál Martin announced that the newborn screening of people with CF would commence in July 2010. This has been a long cherished objective of the CFAI and was identified as a central theme in the Pollock Report (CFAI, 2005).

Since the announcement, the CFAI has played an active role in participating in the Steering Group, which was established to advise on the extension and integration of CF screening. Recent delays may result in a stall of the commencement date of screening. The CFAI will continue to exert pressure for screening to begin as soon as possible.

June–December 2009: CFAI Proactive Response to Swine Flu

In the early stages of the Swine Flu Pandemic, there was limited attention from the HSE on the implications of Swine Flu for people with chronic respiratory illnesses, in particular CF. The general model adopted by the Office of Population Health at this stage was one of ‘one size fits all’. There was very little specific information and guidance from the HSE for

16

Section 3

Key Policy Developments in 2009/10

PWCF. Indeed, in much of the literature at this time, CF was not even specifically mentioned, even though other respiratory conditions such as asthma did feature in HSE literature.

Ireland. The report builds on the in-depth work of the CFAI and in particular the publication of the CFAI’s ‘Pollock Report’ in 2005.

Following concerns raised by the CFAI in June 2009, the CFAI developed a close working partnership with the HSE, thanks to the work of Dr Emer O’Connell in the Office of Population Health. As a consequence of this partnership approach, Guidelines for CF patients were drawn up jointly by the HSE and the CFAI that were subsequently approved by the Medical and Scientific Committee in July 2009. The tragic death of Darina Calpin in August 2009, a young woman (18) with CF and the first death of someone with Swine Flu in Ireland, heightened concerns about the potential harm of the pandemic in Ireland for those with underlying medical conditions. The HSE and the CFAI published further practical cross infection guidance for mass vaccination clinics to help reduce the possibility of cross infection for those not being vaccinated by their G.P. The CFAI will remain vigilant on further outbreaks of Swine Flu and will continue to encourage the vaccination of PWCF and their families.

September–December 2009: Regional Meetings organised

A series of Regional Meetings that commenced in 2009 are continuing in 2010, including the North-East (Kells), Mid-West (Limerick), SouthEast (Kilkenny), South-West (Cork) and the North-West (Limerick). These meetings provide a good opportunity to discuss both local and national issues of concern to CFAI members and have included inputs from the CFAI Chair, Paul Higgins, the CEO, Philip Watt, the local consultant in the CF Centre and from the staff of the CFAI including Martin Cahill, Tomas Thompson, Caroline Heffernan, and Mairin O’Shea.

October 2009: Publication of the HSE CF Services report

In October 2009 the HSE published its Report on Services for People with Cystic Fibrosis in

17

On foot of the Pollock report, the HSE established a Working Group with multidisciplinary membership to undertake a wide-ranging review of services for PWCF in Ireland. The Working Group concluded that best care for PWCF is based upon multidisciplinary care supervised by a specialist centre of CF Centres, as they are now known. This is the model of care that many PWCF have become familiar with, though this is still a work in progress and much remains to be achieved. Other key recommendations of the report were: The enhancement of staffing and accommodation to international guideline levels All services should be designed to minimise the risks of cross infection by the adoption of a service control of infection policy Introduction of a Newborn Screening Programme for CF The Report on Services for People with Cystic Fibrosis in Ireland is available at the HSE and CFAI websites at www.hse.ie and www.cfireland.ie

L-R: Carl Rainey, Former Chairperson CFAI; Paul Higgins, Chairperson CFAI; Philip Watt CEO CFAI; Mary Harney, T.D. Minister of Health and Children, Dr Barry White, HSE Director of Clinical Standards; Professor Charles Gallagher, SVUH and Professor Gerry McElvaney, Beaumont Hospital at the launch of the report

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

November 2009: Focus on Transplant and Organ Donation

To mark the first European Cystic Fibrosis Week (9th–15th November), the CFAI organised a major seminar on the urgent need for a transplant and organ donation policy framework in Ireland. The Keynote Speakers were: Professor Jim Egan, Consultant Respiratory Physician, Mater Misericordiae University Hospital Dr Freda O’Neill, Consultant in Public Health Medicine HSE and Chairperson of the Working Group that published the ‘Audit of Potential Organ Donors, Republic of Ireland’ Joanne Osmond, Clinical Care & Commissioning Manager, Cystic Fibrosis Trust, UK Approximately 70 people attended the seminar. Key recommendations to improve the rate of double lung-transplantation included: The need to appoint two dedicated lung transplant surgeons in Ireland as a matter of urgency A National Organ Donor Registry in Ireland should be developed by the HSE/Department of Health and Children The rapid enactment of the Human Tissue Bill, 2009

From top & L-R: At the Transplant Seminar was Frances McLaughlin (mother of Brendan), Martin Cahill, Fundraising Manager CFAI, Brendan McLaughlin, who had a double lung transplant 18 years ago; Bottom: Dr Freda O’Neill, HSE, Dr. David Vaughan, HSE, Prof Charles Gallagher, Adult CF Consultant, St. Vincent’s University Hospital and NEC member of CFAI.

A Transplant Office and associated team of transplant co-ordinators in Ireland, consistent with good international practice The continued need for transplants to be undertaken in the Freeman’s Hospital in Newcastle, UK until such a time that the Irish programme is meeting its need See Annex 3 for a briefing paper arising from this seminar.

18

04

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Section 4

Advocacy, Services, Awareness and Fundraising

Advocacy

The CFAI continues to help shape and implement government policy in relation to CF Services in Ireland. The outcomes of this advocacy work are set out in the first three sections of this report. In addition to regular meetings with the HSE, in particular with Louise McMahon (a senior manager within the HSE) which have been very useful, a key priority in 2010 is the establishment of CF Reference Group at national level. The proposed aims of this group suggested by the CFAI would be: The continued implementation of the HSE CF Services Report A forum to discuss strategic issues emerging in relation to CF including the implications of emerging research

Analysing common issues raised by parents and PWCF to determine how these should shape future policy development. In short, if there are a number of complaints about a particular problem, the CFAI shapes a strategy to try and address these issues. Policy issues included in this category in 2009 were: Travel insurance Palliative Care The ‘Vests’ used as an aid to physiotherapy and their potential application (if any) to Ireland Good practice in physiotherapy

Public Awareness and Communication

There was probably more awareness and public education about CF in 2009 than at any other time in the history of our Association. The establishment of indicators for CF Centres Many people now understand what CF is and that would measure output and impact what impact it has on PWCF and their families. To provide a focus for measures to address In 2009, the CFAI renewed and revitalised the double lung transplant problem its public awareness strategies. Of central focus, is a much better co-ordinated public Services, Advice and Support Awareness Week 65 Roses/CF Week. This Advice and Support for our members remain a was held from 24th-30th April in 2010 and in key part of services provided by the CFAI. This future years will be designed to coincide is undertaken in a number of ways including: Direct advice and support from staff in CFAI to with our Annual Conference. Many thanks are due to the renowned Irish artist Paul D’Arcy parents and PWCF, in particular, with respect (www.pauldarcy.com) who designed the 65 to interfacing with CF Centres and in seeking Roses Pin and to our friends and colleagues financial support in Allied Imports and ‘One in a Thousand’, in In providing grants for domiciliary particular Zoe and Natasha. physiotherapy, exercise, fertility, transplant, counselling, financial There has been extensive coverage in local distress and bereavement and national media related to CF in 2009 and

20

Section 4

the TV3 ‘Gift of Life’ series highlighted the transplant issue in Ireland with one programme focussing on CF. CF also featured on many occasions on national television and radio. The publication of Spectrum our monthly e-bulletin has been broadly welcomed by our members and those concerned with CF issues in Ireland. The first issue was published in June 2009 and it has continued to be circulated ever since. All issues are also available for download on the CFAI website. We also send out text alerts for particular issues including when urgent action is needed. Many thanks are due to Fuzion, our public relations company and to Language Design for their support for awareness work in 2009/10. We are also indebted to JC Decaux who donated a considerable amount of advertising space to CFAI in 2009. The contribution of JC Decaux was recognised with a special award at our Annual Conference in Kilkenny in April 2010.

L-R: Philip Watt, CEO CFAI, the Mayor of Kilkenny, Mary White, TD, Minister for Equality, Integrationand Human Rights, and Julie Mulleady of JC Decaux being presented with an award at the CFAI Annual Conference in Kilkenny in April 2010

Fundraising in 2009

While it is impossible to cover all the fundraising initiatives that took place in 2009, the following provides a reflection on some of the many fundraising initiatives that sustains the work of the CFAI: The contribution from the Shane Kinsella Fund to CF Services in Ireland which is

21

Advocacy, Services, Awareness and Fundraising

supporting the new four-bed unit in Our Lady’s Children’s Hospital, Crumlin to be opened in 2010 along with the ‘One in a Thousand’ initiative. The contribution of the Shane Kinsella Fund was recognised through an award accepted by Jim Somers on behalf of the Foundation at the 2010 CFAI Annual Conference (see page 24). Each year a group of students from National University of Ireland, Maynooth, (NUIM) organise and complete a cycle event from Maynooth to Galway and back in aid of a chosen charity. CFAI were chosen as beneficiaries in 2009 and the event raised in the region of €80,000. The designation of CFAI in 2009 as the beneficiaries of the Irish Professional Photographers Association’s Happy Faces Day in 2010. The IPPA have also designated the CFAI as beneficiaries for 2011. The annual Paddy Kieran’s Memorial Walk that took place in Vietnam in 2009 and which will be in San Francisco in 2010.

Group photo from the Paddy Kieran’s Memorial Walk that took place in Vietnam in 2009

The 8 marathons in 8 days by ‘Marathon Man’ Gerard Fay of the Drogheda branch. New York Marathon in September 2009, which attracted our highest turn out to date.The huge and very visible participation of CFAI supporters in the Flora Women’s Marathon in June 2009. The exceptional work of the ‘One in a Thousand’ team for the 2010 marathon will be fully recognised in the 2011 Annual Report.

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

L-R: Nutrition expert Paula Mee, Woman of the Year Orla Tinsley, Dragon’s Den star Sarah Newman, business woman Peaches Kemp and athlete Catherina McKiernan launch the “1 in 1000” fundraising initiative for Cystic Fibrosis at a photo call in Phoenix Park. The 1 in 1000 teams aim was to raise funds for a new CF isolation unit at Our Lady’s Children’s Hospital, Crumlin. L-R: Lliana Slevin, Orla Tinsley and Sarah Hayles before bussing it out to the start line at Staten Island for the New York City Marathon.

Lakeshore 10k; 2009 was the inaugural year with 500 runners supporting the CFAI. Celebrity Winning Streak in December 2009 when Brendan Grace nominated the CFAI as one of his two chosen charities. CFAI was nominated as the chosen charity of: Soroptomists Pat the Baker Communications Workers union Irish Professional Photographers Association Fitness league See our website www.cfireland.ie for current fundraising initiatives including many of those listed above.

22

05

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Section 5

Report from the CFAI Annual Conference 2010 The CFAI Annual Conference took place over the weekend of the 24th April in the Hotel Kilkenny. There was a great attendance with over 220 people participating on the main conference day.

The Kilkenny branch excelled themselves – the conference rooms were bedecked with purple to mark the launch of 65 Roses/CF Week, the entertainment was mighty, especially the Gala Dinner. Many thanks to Karen, Kevin and Carmel for their tremendous work. Gerard Fay, Chair of the North-East Branch of the CFAI, began proceedings by completing his marathon walk from Drogheda to Kilkenny, ably assisted by the Drogheda Branch support team. He has raised a mighty €100,000 for CF and was greeted with a champagne reception by many supporters, the Mayor of Kilkenny and Mary White, TD, Minister for Equality, Integration and Human Rights upon arrival at the hotel. At the launch of 65 Roses/CF Week, Chair of the CFAI Paul Higgins presented awards to Julie Muleady of JC Decaux and to Jim Somers (representing the Shane Kinsella Foundation) for their outstanding support for the CFAI in 2009. Irish Artist, Paul D’Arcy was also acknowledged for his work in designing the 65 Roses Badge.

The CFAI announced that former Ireland international soccer player Paul McGrath would be the first Patron of the CFAI. Among other support, Paul is donating funding from his golf classic held in July 2010 towards CFAI for CF services in Temple Street Children’s Hospital and towards medical equipment for Ronan Cahill. The conference on the Saturday was chaired by Dr Daz, CF Paediatric Consultant in Waterford Regional Hospital. In her keynote speech, Rosie Barnes, the former British MP and CEO of the CF Trust in Britain, outlined some of the significant progress that has been made globally and in Britain to addressing CF over the past decade. She particularly highlighted the great strides in research made in recent years. Philip Watt, CEO of the CFAI provided an overview of the progress and challenges in improving CF services in Ireland, focussing on the need for the full implementation of the HSE CF Services Report, which is in effect an endorsement of the CFAI commissioned

From L-R: Alica May, CFAI, Helen Whitty, CFAI, Gerard Fay, NE Branch, and Caroline Heffernan, CFAI; Philip Watt, CEO CFAI, Jim and Terry Somers, representing the Shane Kinsella Foundation, and Martin Cahill, Fundraising Manager CFAI.

24

Section 5

Report from the CFAI Annual Conference 2010

L-R: Rosie Barnes, CEO of the CF Trust in Britain; Dr Animitra Das, CF Paediatric Consultant in Waterford Regional Hospital; Valerie Hall, CF Nurse Consultant, Belfast City Hospital; Members at our conference.

Pollock report. Despite this progress there remains major gaps and weaknesses in implementing agreed government policy in relation to CF. There will be a much higher dependency on fundraising for CF services in the future as a consequence of the severe cutbacks in our health services. Caroline Heffernan, Patient Advocate of the CFAI, addressed issues relating to transition of care from paediatrics to adult services, the fears many experience surrounding this transition and her own personal perspective on this often difficult time. The morning was rounded off with three seminars focusing on the themes of ‘Nutrition’, ‘Transition from Child to Adult CF Centres’ and ‘Transplantation and Organ Donation’. A brief synopsis of the main issues raised at the seminar workshops is noted below. Nutrition – Good Practice Paediatric nutrition Marie Roddy, Paediatric Dietician, AMNCH (Tallaght Hospital) Adult nutrition Lynda O’Shaughnessey, Senior Dietician, St Vincent’s University Hospital Caitriona Hayes chaired a very informative and interactive seminar on ‘Good Nutrition’ practice for PWCF. Marine Roddy, Paediatric Dietician at Tallaght Hospital, and Lynda O’Shaughnessey, Senior Dietician at St Vincent’s University Hospital, gave a duet on do’s and don’ts of paediatric and adult nutrition. The seminar was

25

very interactive and the audience was required to take a nutrition quiz, answering a number of questions relating to their vitamin and mineral intake – the results were compared with the recommended daily allowances for PWCF. Transition from Child to Adult CF Centres Overview Dr Michael Mahony, Consultant Paediatrician specialising in CF, Mid-West Regional Hospital, Limerick Patient perspective Caroline Heffernan, CF Advocate, CFAI The aim of the workshop was to provide medical and patient insight on the transition from paediatric to adult care services in CF centres. The medical insight was presented by Dr Mahony, and it was interesting to notice how the two presentations complemented each other with overlapping insights, particularly in relation to the lack of facilities and the timing on when transition should take place. The patient insight presented by Caroline Heffernan focused on why, when and where the transition is needed. From a parents perspective, the main concern is how the transition is going to happen. The discussion on why, when, where and how is very wide, but during the seminar particular attention was given to the reasons for why transition of care is seen as problematic: these reasons can be summarised under “fear of moving”: fear is caused by the lack of facilities, which leads to cross-infection issues, fear of the new team, fear of becoming responsible of your own

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

care, parents attachment, media coverage and passing of friends.

Newcastle. A ‘gift of life’, he says, ‘doesn’t come close to describing how it feels to be a transplant recipient’. The first breath, he said, was an amazing feeling that he remembers vividly.

The two speakers were both in agreement that the Six Steps Program for Transition of Care in England should be used as an example to create a good transition programme in Ireland as well. This program shows that transition should go hand-in-hand with life developments, maturity and independence. The discussion was led by parents, who mainly raised issues they are facing with their young adults, which relates back to the lack of proper isolation facilities, “the fear of moving” and everything it entails. Transplantation and Organ Donation Overview of the challenges in Ireland Terry Mangan, Chair, Irish Donor Network The clinical objectives of the National Lung Transplantation document (March 2001) have not been met, especially with regards to the proposed 35 thoracic transplants per year. Since the commencement of the lung transplant programme in the Mater Hospital in 2005, transplant activity arising from donated organs in Ireland remains low. There is a huge underutilisation of donated organs in this country. At the time of this conference, only 5 lung transplants had taken place in Ireland since 2008; the CFAI and the Irish Donor Network have advocated since 2001 to improve this situation. The Irish Donor Network, of which the CFAI is an important member, has advocated since 2001 for a National Transplant Authority. Terry emphasised that the barriers to higher transplant activity must be identified, strengthening the role and/or appointing positions of transplant co-ordinators must take priority, and a transplant office must be established within the HSE to monitor and co-ordinate organ transplantation and donation in Ireland. Living with a double lung transplant Declan O’Doherty, CF Double Lung Transplant Recipient At 23-years of age, Declan received a double lung transplant in the Freeman hospital in

Declan has since travelled extensively and currently lives in Galway. He spoke of the importance of having a positive mental attitude, and urged people to not only carry organ donation cards, but to discuss such wishes with their families and friends. Declan spoke of the great bond that exists between PWCFs, akin to having a second family. See Annex 3 for more information on the Transplantation and organ donation issue. Comments/Questions Concerns amongst people regarding whether they should go on the transplant list in the Mater Hospital in Dublin or the Freeman Hospital in Newcastle Expertise at the Mater hospital is not the problem CFAI were encouraged to do more to promote organ donation specifically for lungs (a lot of people only associate the current Organ Donor Card with kidneys) Everybody has equal rights to organ transplantation (public vs. private issues) The HSE is failing to acknowledge that there is a problem regarding the low levels of lung transplants in Ireland Following the morning seminar series, Professor Gerry McElvaney, Consultant Respiratory Physician at Beaumont Hospital, provided us with an overview of recent advances in research into CF, and how the outcomes of this research applies to PWCFs in Ireland. Several clinical trials were highlighted, the preliminary results of which are very exciting. The afternoon seminars focused on the themes of ‘Financial Supports for parents and people with CF’, ‘Cross-Infection’ and ‘Physiotherapy’. A brief synopsis of the main issues raised at each of these seminar workshops is noted below.

26

Section 5

Report from the CFAI Annual Conference 2010

Financial Supports and Recent Changes for Parents and People with CF Recent changes in policy and payments Louise McCann, Disability Federation Ireland

and through forums at regional, national and European level to ensure PWD can exercise fully their civil, social and human rights.

DFI is an umbrella body with 150 disability organisations, of which CFAI is a member. The role of the DFI is to provide information, training and advice, development, advocacy and research and training to its members. Louise’s presentation highlighted the recent changes in policy and payments for the 2010 period, referring to the National Disability Strategy (NDS) and budget impacts for 2010. The NDS is a framework of policy and legislative measures to support the inclusion of disabled people in Irish society. It is a tool used by DFI and other disability organisations to evaluate the budget and finances. Louise discussed the shortfalls in the 2010 budgets and how they impact on PWCF and their families. Budget 2010 cut disability allowance by €8.30 (4.1%) per week, in addition to the abolishment of the Christmas Bonus. As of January 2010, the disability allowance was reduced from €204.30 to €196 per/wk. These cuts were made without acknowledgement to the costs of disabilities or medical conditions. Budget 2010 introduced a 50 cent charge per prescription item for medical card and Long Term Illness Card holders, subject to a monthly ceiling of €10 per family. The threshold for the drugs payment scheme increased from €100 to €120 per month. Budget 2010 also introduced a carbon tax on fossil fuels. From May 2010 the tax will be applied to fuel and natural gas, with a vouched fuel allowance scheme to be introduced to offset the increases for low income families. There is already a €170m shortfall to Disability Health Funding and “the big squeeze” currently being applied makes financial issues even more difficult for people with disabilities (PWD). DFI will continue to advocate and represent PWD through the Social Partnership process, as a social partner at the National Economic and Social Forum, HSE Co-ordinating Committees

27

An overview of entitlements Madge O’Callaghan, Disability Advocate Madge is an advocate with the Ballyfermot Advocacy Service, providing outreach advocacy services for PWD primarily in Dublin 10 and 20. The Ballyfermot Independent Advocacy Service (BIAS) was set up in February 2006. BIAS is a joint venture with the Citizens Information Service and Cheshire Community Living to serve PWD in the Ballyfermot area where PWD statistics are 12.8% as opposed to the national average of 8.4%. This initiative is working extremely well and has 50–60 clients per annum. It involves PWD through community initiatives e.g., Schools Poster Competition, seminars, training, Irish sign language book. BIAS also contribute with input to sectoral plans and submit social policy reports to the Citizens Information Board (CIB). Madge gave a very comprehensive overview of the rights and entitlements available to PWCF and their families. A more detailed synopsis of these matters was circulated in the May issue of the CFAI e-bulletin Spectrum. Cross Infection – the Practical Challenges Challenges for CF Centres and patients on cross infection issues Valerie Hall, CF Nurse Consultant, Belfast City Hospital A total of 285 CF adults currently attend the Belfast Adult Centre. No shared care agreement is established at the moment. Aggressive infection control measures are in place to avoid person–person spread of infections. Direct patient interaction is generally prohibited. Segregation of in-patient and out-patient facilities is in place, and equipment is not shared. The specialist teams rotate from room to room to see patients. Challenges for CF Centres include available resources, adequate facilities, staff and equipment, and education of staff.

Cystic Fibrosis Association of Ireland

Challenges for PWCFs include social isolation, peer support, and user involvement in service planning and delivery. An update on B. Cepacia and Pseudomonas Jonathan Collins, Researcher, Microbiology Dept, AMNCH (Tallaght) Hospital The Burkholderia cepacia complex are a group of related bacteria that behave very similarly in the lab, but are very different genetically. This family of bacteria are nutritionally diverse, are very versatile and remain viable in lots of environments (even in chemicals). They have advanced methods of cell-cell communication and can even alter the virulence mechanisms of other cells. In 1997 there were 5 known species; in 2010 there are 24, each with different capabilities and their own specific ‘fingerprint’. B.cenocepacia and B.multivorans are the most significant; clones from these species have been associated with major outbreaks. DNA-based methods are essential for identifying this group of bacteria, and Tallaght hospital currently provides this service for free for all CF Centres in Ireland. Identification of these species is critical for effective infection control. The CF laboratory in AMNCH also identifies novel and emerging bacteria in Irish CF patients. Comments/Questions In Belfast, CF patients do not go to A&E. A 24-hour on-call service is in place whereby

Annual Report 2009/10 Progress & Plans

nurses and consultants can be contacted if necessary. Cross infection on airplanes; suggestion for airlines to limit one PWCF per airplane Some hospitals in Ireland send their sputum samples to the UK for further testing (normally for antibiotic synergy testing as opposed to for isolation purposes) Direct access and ring fencing for CF beds is key; must apply political pressure on government to ensure cross-infection recommendations are implemented Physiotherapy – Good Practice Focus on good practice Irene Maguire, Senior Physiotherapist, HSE West, University College Galway Irene provided an excellent slide show covering all aspects of physiotherapy procedures, and articulating the contemporary norms in practice today. She also gave a detailed, comprehensive presentation on current practices, using international authors to support theories underlying these practices. Among the variety of subjects covered are those listed below: Airway clearance Management of the upper airways Inhalation therapy service Exercise testing and prescription Oxygen therapy assessment

L-R: Theresa Higgins, Mary Hackett and Anna Trindals; Irene Maguire Senior Physiotherapist, HSE West, University College Galway and Grainne O’ Malley; Carmel Delaney, Kevin and Karen Prendergast, Kilkenny Branch.

28

Section 5

Spirometry service Postural screening Management of musculoskeletal complications A key point made is that prescription of physiotherapy techniques is specific to the individual patient and depends on factors such as age, ability to learn and patient preference. Irene advocates collaboration between patient and physiotherapist. On speaking about exercise, Irene reported that evidence from Galway over the last 3 years indicates that exercise and good levels of fitness improved the ability of post-transplant patients getting out of bed. Irene also stated that exercise enhances airway clearance, while weight-bearing activity enhances bone deposition and is an antidote to osteoporosis. A short discussion followed about the use of the ‘Vest’, in which it was clarified that this equipment must be treated as complimentary to, rather than a replacement for, physiotherapy. Consultation with the CF team is also paramount prior to using the vest. Irene indicated that a number of reports from Europe, Canada and Australia comment unfavourably on the vest. Following a break in the evening, the night’s events kicked off with the Gala Dinner and dance, accompanied by excellent entertainment and a vast array of raffle prizes up for grabs. A special acknowledgement to Carmel Delaney for donating her beautiful 65 Roses crochet quilt to the raffle – a huge amount of time and effort clearly went in to crafting this prize.

29

Report from the CFAI Annual Conference 2010

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Annex 1

Programme of Work Progress The following tables summarise the CFAI’s Programme of Work from September 2009 to July 2010.

Objective 1: Improving CF Services in Ireland 1.1 Launch of the HSE Report ‘Services for People with Cystic Fibrosis in Ireland’ Actions

Responsibility

Timeframe

Progress to July 2010

Launch of the Report by HSE in association with the CFAI

HSE/CFAI

Sept/Oct 2009

Launched 13 Oct 2009 including coverage on main RTÉ News

1.2 Implementation of the HSE Report ‘Services for People with Cystic Fibrosis in Ireland’ Actions Responsibility Timeframe Progress to July 2010 Seek establishment of implementation framework

CFAI working with key stakeholders

Oct 2009 onwards

1.3 Effective expansion of CF services in Ireland Actions Responsibility Timeframe Including the development of en-suite isolation beds, day centres and out-patient facilities in particular

CFAI working with key stakeholders

2009-2010

Proposal by CFAI for HSE to establish CFAI Reference Group agreed and to be rolled out in Autumn 2010

Progress to July 2010

See progress outlined in Section 2 of this report

1.4 Monitoring progress or lack of progress on CF Services in Ireland Actions Responsibility Timeframe Progress to July 2010 Audit of CF Services in Ireland undertaken every six months

CFAI in partnership with CF Centres and Branches

1.5 Programme of meetings with CF Centres Actions Responsibility Meeting with consultants, hospital management, relevant Branches

CFAI

To be commenced

Timeframe

Progress to July 2010

Jul 2009 onwards

Ongoing; meetings arranged when necessary

30

ANNEX 1

Programme of Work Progress

1.6 High level liaison meetings with HSE and Department of Health and Children Actions Responsibility Timeframe Progress to July 2010 Framework of regular meetings

CFAI

1.7 Highlighting improvements in services Actions Responsibility Public awareness initiatives/ CFAI launches

Jul 2009 onwards

Ongoing (see1.2)

Timeframe

Progress to July 2010

Nov 2009 onwards

Spectrum – monthly e-bulletin of the CFAI

1.8 Highlighting weaknesses and gaps in CF services Actions Responsibility Timeframe Advocacy, lobbying, campaigning

CFAI in Sept 2009 partnership with onwards key stakeholders

Progress to July 2010

Numerous Media reports (Comprehensive press file in office). CFAI awarded winner of 2010 Award for Excellence in Public Service

1.9 To participate in, and to shape the proposed expansion on, the Newborn Screening Programme to include CF Actions Responsibility Timeframe Progress to July 2010 Participation in Steering Group and the training and education project team

31

HSE and CFAI and other key stakeholders

Jun 2009Dec 2010

CFAI chairs the training and education subgroup and has actively shaped the proposed programme. Target commencement December 2010

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Objective 2: Improving the rate of lung transplantation in Ireland Actions

Responsibility

Timeframe

Progress to July 2010

2.1 Shaping the development of an effective transplant authority/office

CFAI and other stakeholders in lung transplantation

2009 (Human Tissue Bill) and establishing an authority from 2010 onwards

Ongoing; Major Conference, Nov 5th 2009; Briefing paper (see Annex 3); Meetings with key stakeholders

2.2 Improving the level of multiorgan donation in Ireland, including the development of an organ donor database

CFAI, other 2009-2011 charities, HSE (see also awareness week)

Work with The Irish Donor Network including meeting with Dr. Barry White

2.3 Improving the rate of double lung procurement and utilisation

CFAI and other stakeholders in lung transplantation

2009-2011

See Annex 3

2.4 Working with transplant specialists to improve rate of double lung transplantation in Ireland from present rate to minimum of 15 per annum

CFAI and other stakeholders in lung transplantation

2009-2011

See Annex 3

Objective 3: Responding to critical issues (examples) 3.1 H1N1 Virus response strategy Actions

Responsibility

Timeframe

Progress to July 2010

Development, implementation and review of HSE guidelines for PWCF

HSE in partnership with the CFAI

Jul 2009 onwards

Joint guidelines agreed by CFAI; Swine flu vaccination arrangements shaped by CFAI; New HSE information highlighted

3.2 Challenging cut-backs in the health services and entitlements impacting on PWCF Actions Responsibility Timeframe Progress to July 2010 Highlighting and campaigning against cut-backs

CFAI in Ongoing partnership with national disability bodies

Highlighting implications for PWCF arising from budget cuts; Working with the DFI to campaign against cuts

This section is to be expanded as issues arise

32

ANNEX 1

Programme of Work Progress

Objective 4: Develop public awareness and education programmes to educate general public, HSE, funders, politicians about CF Actions

Responsibility

Timeframe

Progress to July 2010

4.1 National CF Awareness Week revamped

CFAI, Branches, Apr 2010 PR Support through Fuzion

High profile awareness week 65 Roses launched at National Conference

4.2 Mini-awareness week focussing on need and role of transplant authority and donation issues

CFAI, Branches

1-7th Nov 2010

Undertaken; focused on Seminar and information about European CF week

4.3 Establish an Education and Awareness Sub-Group

CFAI

2009

Established and two meetings organised

4.4 Other awareness initiatives; using funding events to highlight CF through the media

CFAI, Branches

2009-2010

Range of events – media file gives further details, some highlighted in Spectrum; Programme on TV3 in January 2010 highlighting plight of those on lung transplant waiting list.

Objective 5: Improving access to third level colleges Actions

Responsibility

Timeframe

Progress to July 2010

5.1 Influencing Higher Education Authority, individual colleges, identification of good practice

CFAI working with HEA and colleges

2009-20011

Preliminary work in 2009, including meeting with UCD – main focus 2010

Objective 6: Improving access to employment and training Actions

Responsibility

6.1 Developing existing and CFAI/FÁS identifying new initiatives involving FÁS, employers and trade unions

33

Timeframe

Progress to July 2010

2009-2010

To be commenced 2010

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Objective 7: Continuing to improve communication with our members Actions

Responsibility

Timeframe

Progress to July 2010

7.1 Publication of monthly e-bulletin Spectrum

CFAI/Branches

2009-2010

11 issues

7.2 Publication of new high quality Report twice a year, including one to coincide with Annual Conference

CFAI/Branches

2009-2010

First summary report published to coincide with Annual Conference in Kilkenny

7.3 Increased participation CFAI/Branches by staff in Branch meetings, events, fundraising nitiatives, as resources allow

2009-2010

Main focus on Regional Meetings and initiatives

Objective 8: Increased support to Branches Actions

Responsibility

Timeframe

Progress to July 2010

8.1 Regional meetings

CFAI

Autumn 2009

Completed: North East, South-East and Mid-West. South-West and more to follow in 2010

8.2 Proactive contact with all Branches by designated member of staff

CFAI/Branches

2009-2010

Ongoing

8.3 Dissemination of resource materials for National Awareness Week

CFAI

Autumn 2009

Commenced 2009 through Spectrum. Main focus early in 2010

8.4 Training sessions

CFAI

2010

34

ANNEX 1

Programme of Work Progress

Objective 9: Maximise the fundraising potential of the CFAI to improve CF services in Ireland Actions

Responsibility

Timeframe

Progress to July 2010

9.1 To strive to maintain current funding levels in the context of a significantly worsened economic situation

CFAI and Branches

2010

Most charities have experienced dip in 2009 – CFAI has continued to maintain its fundraising income

9.2 To consolidate existing funding initiatives and to identify new initiatives

CFAI

2009-2010

New initiatives include, for example, a planned in-patient facility in MWRH and a new out-patient facility in Drogheda

9.3 To fully implement the Raiser’s Edge fundraising package

CFAI

2009

Raisers Edge fundraising package now fully up and running and there has been a significant increase in our database

9.4 To support local Branches in fundraising programme

CFAI

2009-2010

Ongoing through advice, provision of equipment

9.5 To continue to roll out and to evolve the ‘buy a brick’ initiative

CFAI

2009-2010

Ongoing – over €100,000 brought in so far

Objective 10: To continue to provide CF services to the highest standards Actions

Responsibility

Timeframe

Progress to July 2010

10.1 To review and where appropriate consolidate, upgrade or retarget existing support programmes by CFAI

CFAI

2009-2010

Internal review of personal support grants. Strategy paper currently being prepared

10.2 To seek to improve palliative care provision in Ireland

CFAI

2009-2010

Ongoing

10.3 To continue to revise and to publish information booklets

CFAI in 2009-2010 partnership with bodies such as the Citizens Information Centre

Employment booklet completed; Digestive enzymes sheet for schools needs to be done

10.4 To continue to provide high quality information and advice

CFAI

2009-2010

Ongoing; primarily through the work of Helen, Alica, Caroline and Tomas

10.5 To provide advocacy on CFAI behalf of individual members in accessing services

2009-2010

See 10.4; significant increase in calls to the office in 2009

35

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

Objective 11: Office and Human Resources Actions

Responsibility

Timeframe

Progress to July 2010

11.1 To draw up and implement a health and safety policy

CFAI

2009

11.2 To review existing terms CFAI and conditions of staff in the context of good practice in the voluntary sector, including for longer serving staff, but also taking into account present economic conditions 11.3 To draw up a new CFAI training and education policy as part of a staff handbook 11.4 To improve the CFAI appearance of the Office, with particular emphasis on common areas

2009

Completed Dec 2009. Health and Safety Audit and Statement completed. Martin Cahill appointed Health and Safety Officer Draft Staff Handbook completed; to be agreed by NEC

2009

Completed as part of 11.2

2009-2010

Programme of Work in place May 2010

Timeframe

Progress to July 2010

12.1 To deepen the linkages/ CFAI partnership between CFAI Branches and the Head Office

2009-2010

12.2 To significantly increase CFAI role of subcommittees and working groups 12.3 To develop stronger CFAI linkages with local CF charities and where appropriate encourage joining to the CFAI 12.4 To consider further CFAI overall governance issues

2009-2010

Regional meetings; Spectrum; Attendance at branch meets on occasion; Building up of trust ongoing Comprehensive range of subgroups agreed by the NEC Contact established with four local CF charities – process of building up trust and joint working commenced

Objective 12: Governance Actions

Responsibility

2009-2010

2009-2010

Ongoing

36

CFAI National Executive Council and Staff in 2009

ANNEX 2

Annex 2

CFAI National Executive Council and Staff in 2009 National Executive Council

Paul Higgins (Chairperson)

John Coleman (Treasurer)

Brendan Lonergan (Secretary)

Sean O’Kennedy (Vice Chairperson)

Mary Lane Heneghan

Cyril Gillen

Louise Harty

Esther L’Estrange

Karen Prendergast

Kenneth Flanagan

Isobella Higgins

Ian Duffy

Tess Brady

Catriona Hayes

37

Cystic Fibrosis Association of Ireland

Annual Report 2009/10 Progress & Plans

National Executive Council members not present in photographs Ann Aston Joseph Browne Vice Chairperson Nathan Swan Charles Gallagher Patrick Gallagher Tracey O’Kennedy John Dolan Carmel Delaney

Until 01/06/09 Until 07/01/10

Until 01/07/10 Until 01/04/09

Staff

Position

Philip Watt Godfrey Fletcher Helen Whitty Martin Cahill Eufemia Solinas Agata Adamaszek Alica May Mairin O’Shea Grainne Kennedy Tomas Thompson Caroline Heffernan Suzanne Brock

Chief Executive Officer

From 05/09

Chief Executive Officer

Until 05/09

Operations Manager Fundraising Manager Fundraising Co-ordinator Finance Officer Services and Information Officer Services and Communications Officer

Until 03/10

Fundraising Co-ordinator

Until 04/10

Advocacy Officer (PWCF) Advocacy Officer (PWCF) Secretary

38

ANNEX 3

Transplant and Organ Donation Issue

Annex 3

Transplant and Organ Donation Issue Transplants are a crucial part of the range of recognised interventions needed to manage CF. Like any other major surgery, transplants carry considerable risks and a transplant is appropriate only for a patient who is severely ill and who has tried all other forms of conventional treatment. To these patients, lung transplantation can offer both the chance of an extended life and a significantly better quality of life. In individual cases it can have a transforming impact, for example, in the case of Declan O’Doherty. Declan O’Doherty CF Double Lung Transplant Recipient

Unfortunately, there are too few double lung transplants being undertaken on either CF or non-CF patients living in Ireland. There are around 50 people (CF and non-CF) waiting for a lung transplant in Ireland. Of this figure, around 30 are people with CF awaiting a double lung transplant. Other patients awaiting a double lung transplant in Ireland include those with bronchiectasis, emphysema and pulmonary hypertension. At present, double lung transplants for patients in Ireland are carried out at the Mater Misericordiae Hospital in Dublin and in the Freeman Hospital in Newcastle, England. The quality of the surgical teams and the care administered to patients before and after surgery is very high in both centres, which is reflected in success rates at each site. However, unfortunately the numbers of transplants being undertaken in both centres is presently insufficient to make a significant impact on the current waiting lists.

At 23-years of age, Declan received a double lung transplant in the Freeman hospital in Newcastle. A ‘gift of life’, he says, ‘doesn’t come close to describing how it feels to be a transplant recipient’. The first breath, he said, was an amazing feeling that he remembers vividly. It is now over 10 years since Declan received his transplant. He says that many people are surprised to learn that he has CF and that he has had a transplant because he looks so healthy. Declan has since taken part in the World Transplant Games held in Japan (above), and more recently at the European Transplant and Dialysis Games in Dublin. He has travelled extensively and currently lives in Galway with his family.

39

There have been only 5 double lung CF transplants undertaken in the Mater Hospital in the last three years, although encouragingly 3 of these were carried out between April and September 2010. Newcastle has undertaken on average 5-6 transplants on Irish patients. The concerns for a CF patient waiting for a transplant include: Will I get a transplant on time when I need a lung transplant? Will I be well enough to get accepted on a transplant list? Where is my best chance for getting a transplant? Will I stay well enough to be kept on a transplant list?

Cystic Fibrosis Association of Ireland

Policy Framework The CFAI organised a seminar in November 2009 that brought together all the key partners in the lung transplant and organ donation field in Ireland. The seminar identified five key action points for developing a policy framework that would lead to a successful lung transplant programme in Ireland. These were as follows:

1. The recruitment of two dedicated lung transplant surgeons

The seminar recommended the urgent need to appoint two dedicated lung transplant surgeons in Ireland. This was before the news that the foremost lung transplant surgeon in Ireland, Mr Freddie Wood, a highly respected general surgeon in the Mater Hospital, announced his retirement, which took effect from June 2010. The retirement of Mr Wood is a major loss for surgery in Ireland, but focuses the need for dedicated lung transplant surgeons. Action Points: We would strongly urge that a dedicated lung transplant surgeon is appointed to replace Freddie Wood as an immediate first step and resources are identified to recruit a second dedicated surgeon as quickly as possible. We understand that there are dedicated surgeons who would be interested in fulfilling these roles. If necessary, the CFAI will assist in fundraising a significant part of the costs in recruiting a second surgeon.

2. Establishment of the Transplant Unit

The CFAI strongly welcomes the decision to establish a Transplant Unit as identified in the HSE Corporate Plan for 2010: ‘National Specialist Service Organ Donation and Transplantation Unit Establishment of an organ donation and transplantation unit within the existing resources and national structures Assignment of clinical lead to drive the work of this unit Collation of comprehensive performance data provided by all the transplant centres

Annual Report 2009/10 Progress & Plans

Commencement of national reporting, monitoring and assessing of organ donation and transplantation activities’ Action Points: The CFAI welcomes the proposed establishment of the Organ Donation and Transplant Unit in 2010, but has concerns around the following: The need for adequate resources for the Unit The need for adequate powers for the Unit The need for the unit to involve all key stakeholders including the Department, the HSE, key clinicians and patient advocate groups The need of the Unit to have a degree of independence, particularly in the appointment of the Chairperson who should not be closely associated with the three existing transplant hospitals in Ireland

3. The urgent enactment of the Human Tissue Bill, 2009 and EU Directive According to a HSE Audit of Organ Donation and Transplantation in Ireland published in 2009 ‘Ireland at present has no legal system underpinning organ donation and transplantation. A legal system is essential to establish protocols for diagnosis of brain-stem death and to underpin arrangements for giving consent for donation.’

In 2009, a Human Tissue Bill was introduced but has not progressed through the Oireachtas. The EU Commission published a draft directive on organ donation in 2008. They estimated that 56,000 are waiting for a suitable donor in the EU and 12 people a day die awaiting a transplant. They have also published an Action Plan 20092015 to stimulate joint actions and co-ordination in member states. Action Points: The CFAI is concerned that the Human Tissue Bill is not being given the necessary priority to ensure its successful and speedy enactment. The Bill must bring Ireland into line with the 10 points set out in the Draft EU Directive on Transplantation, including the establishment of an effective Transplant Authority.6

6 http://ec.europa.eu/health/ph_threats/human_substance/oc_organs/oc_organs_en.htm

40

ANNEX 3

Transplant and Organ Donation Issue

4. The overhaul of the organ donation system in Ireland

5. Need for specially trained Donor Co-ordinators in all the major ICU’s in Ireland

The present system and awareness campaigns for encouraging organ donor awareness in Ireland are inadequate. The awareness campaigns are under-funded and have limited impact on raising organ donor awareness. There is at present no online system for registering as a donor, in contrast to other countries, including the UK. A new organ donation awareness programme needs to be developed by the Government in partnership with the key nongovernment organisations involved in donation/ transplantation issues, which are represented on the Irish Donor Network. A government-only or an NGO-only led approach will have significant weaknesses, including the potential loss of public goodwill that might be associated with a solely government led approach. Action Points: Donor awareness and registration should be the responsibility of the new Transplant/ Donation Unit. Donor awareness campaigns should emphasise the donation of all organs. Donor awareness should be informed by all key stakeholders, including the members of the Irish Donor Network. Adequate representation on the Transplant Unit/Authority and other consultative mechanisms are vital (see also point 2).

41

Donor co-ordinators are a feature of many of the successful transplant programmes in the European Union, including Spain and Belgium. The role of the Donor Co-ordinators is to ensure that the use of available organs from ICU units is maximised. Action Points: There is a need for specially trained transplant co-ordinators in the major ICU’s – the successful Spanish Model has proved without a doubt that transplant co-ordinators will increase both the donation rate and the recovery rate or organs. Properly resourced retrieval and transplant teams are required. These need to be available 24/7, 365 days a year.

Overview – Progress and Challenges in 2009/10

Section 1

About the Cystic Fibrosis Association of Ireland (CFAI) The CFAI is a registered charity CHY 6350 that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. It is a national organisation with many Branches around the country and our members are mostly parents and people with CF. The CFAI is committed to working to improve CF services in Ireland and our recent progress includes: Lobbying to ensure that the new national adult CF centre in St Vincent’s University Hospital will be completed Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Cork and Limerick Hospitals Funding research Campaigning to improve the rate of double lung transplantation in Ireland Providing advice and expertise

Cystic Fibrosis Association of Ireland CF House 24 Lower Rathmines Road Dublin 6 Ireland

t: +353 1 496 2433 f: +353 1 496 2201 e: info@cfireland.ie w: www.cfireland.ie Charity: CHY6350 Company Reg: 449954