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iMPACT & Annual REPORT 2012/3 A commitment to help and support 24 Lower Rathmines Road, Dublin 6 email info@cfireland.ie | website www.cfireland.ie | Charity No. CHY 6350


About Cystic Fibrosis Ireland CFI 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. CFI 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 was completed with up to 34 inpatient beds for people with CF • Providing funding towards new CF Units around the country including Crumlin, Drogheda, Galway, Mayo, Waterford, Beaumont and Limerick Hospitals • Funding research in Cork University Hospital and University College Dublin • Campaigning to improve the rate of double lung transplantation in Ireland • Providing advice and expertise


2012/3

CONTENTS Foreword John Coleman, Chairperson CFI & Philip Watt, CEO, CFI

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Introduction The impact of Our work in 2012/3

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Section 1 New CF Inpatient and Outpatient Centres

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Section 2 Increasing the rate of lung transplantation

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Section 3 Grants and Support Services

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Section 4 Celebrating 50 Years

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Section 5 Research

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Section 6 Major Events

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ANNEX National Executive Council and Staff 2012/3

Information on Impact & Annual Report 2012/3 This is the Impact & Annual Report of Cystic Fibrosis Ireland (CFI) for 2012 and 2013. The purpose of this summary is to provide an overview of the work of CFI during this period, and to highlight the impact our organisation has had on CF care in Ireland. CFI is a voluntary, non-profitable, charitable organisation. It was set up in 1963. CFI 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


Foreword “Cystic Fibrosis Ireland ­remains a lean but effective organisation”


Foreword This report seeks to not just reflect the work of Cystic Fibrosis Ireland (CFI) but to highlight our impact over 2012/13. These reports will be published every two years. CFI also publishes an annual financial report. Both of these reports are available on our website. Our work and impact would not be possible without the support of our Board, our fantastic branches, the key advice from our Medical and Scientific Council (MSC) and the many people and companies who support our community and corporate fundraising. CFI remains a lean but effective organisation. We are signed up to and conform with charity regulations and fundraising best practice. In recognition of our work, CFI was awarded the prestigious 'Oustanding Contribution to Healthcare Award' in 2013, the same year that we celebrated the 50th year of our Association.

John Coleman

Philip Watt

Chairperson, CFI

CEO, CFI

CFI Impact & Annual Report 2012/3 Foreword

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Introduction “CFI continues to make a significant impact on CF care in Ireland in an increasingly difficult environment�


Introduction

The Impact of Our Work Cystic Fibrosis Ireland has played a key role in advancing CF care in Ireland in 2012/13 Cystic Fibrosis Ireland (CFI), the national CF charity, has played a key role in advancing CF care in Ireland in 2012 and 2013, the period covered in this report. This progress could only have been achieved through our approach of working in partnership with the dedicated CF centres around the country, our Branches and our many supporters at a national, regional and local level. This report seeks to show that CFI continues to make a significant impact on CF care in Ireland in an increasingly difficult environment. There continues to be cutbacks across the health service in Ireland which means that: • Key frontline healthcare staff, including specialised CF nurses, physiotherapists and dietitians are not being replaced when on sick or maternity leave • There are no improvements in out-dated CF centre buildings without major charitable support, mainly from CFI • The conditions in some hospitals, in particular, inpatient rooms in Beaumont Hospital remain completely unacceptable • It is an increasingly difficult fundraising environment because of recent controversies linked to CRC and Rehab

CFI Headlines for 2012/13 The opening of the new daycare and inpatient centre in St Vincent's University Hospital (SVUH) in August 2012; the Irish Government's decision to approve the use and payment of the ground breaking drug 'Kalydeco' in February 2013 and the increase in double lung transplants are perhaps the three most important developments in 2012 and 2013. CFI played a key role in all three of these developments.

CFI Impact & Annual Report 2012/3 Introduction

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Summary of our Impact for 2012/13 • Û2.7m committed by CFI to build CF inpatient and outpatient units around the country in five hospital centres • Û314,000 spent on essential grant assistance for PWCF and their families • Û176,000 spent on CF research projects undertaken in Ireland • Û180,000 committed to advice, information and patient support • New CF unit in St. Vincent's University Hospital opened in August 2012 • Rate of CF double lung transplantation increases from 4 in 2012 to 9 in 2013

Rate of double

lung transplantation for people with CF increases from 4 in 2012 to 9 in 2013

• Ireland hosts a hugely successful European CF Society conference in 2012 • CFI advocates successfully for the ground-breaking CF drug Kalydeco in 2013 • CFI awarded CMG 'Outstanding Contribution to Healthcare' award for 2013 • CFI celebrates and remembers 50 years of work to improve CF services and supports in Ireland from 1963-2013 About Cystic Fibrosis Ireland • 98% of our funding is through public/corporate donations, only 2% comes from Government funding • CFI involves over 500 volunteers and has 12 staff

CFI advocate successfully for the ground-breaking CF drug

Kalydeco in 2013

• One quarter of CFI staff are people with CF • CFI is only one of a handful of charities in Ireland that are fully compliant and signed up to the charity governance codes and fundraising codes • The CEO salary is on the public record and in effect is around Û80,000 taking into account unclaimed mileage expenses. This is at the lower end of salaries for CEOs in equivalent charities. There are no other staff that are paid over Û60,000. CFI Impact & Annual Report 2012/3 Introduction

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Section 1 “In 2012/3 CFI committed 2.7 million for CF building projects around the country”


Section 1

New CF Inpatient and Outpatient Centres In years to come, 2012 and 2013 may well be seen as an important turning point in Cystic Fibrosis care in Ireland sUMMARY OF Building Projects In 2013 CFI committed Û2.7million for CF building projects and the following progress was made around the country. These are partnership projects with our local Branches and local supporters, and the CF centres in the region. • The building of a paediatric outpatient centre in Lourdes Hospital, Drogheda which will open in March 2014. Funding for this project was provided by CFI, the Louth and Meath Branches of CFI, the National Lottery and the hospital • Significant progress in the development of a Û4.1m adult CF inpatient and outpatient unit in University Hospital, Limerick (UHL) to be opened in early 2015. This is supported by TLC4CF/CFI and JP McManus Pro-Am tournament and in partnership with UHL/HSE in a joint development with the Parkinson's Association and the UHL Foundation • The commencement of work to build a new CF outpatient centre in Mayo General Hospital, supported by CFI and CF West, including the Mayo Branch of CFI. Some of those included in the picture below include Martina

An Taoiseach Enda Kenny turned the sod at Mayo General Hospital on 16th December 2013.

CFI Impact & Annual Report 2012/3 New CF Centres

Katie Drennan (PWCF) and Finance Minister Michael Noonan at the official launch of building development plans at University Hospital Limerick.

"It's a tremendous day. This new unit means peace of mind for so many people with CF." Katie Drennan, PWCF

Hospital manager in UHG Ann Cosgrove, with Mary Lane Heneghan, Galway Branch, and a digger on site.

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Paige Brennan (PWCF, 5) with local hurlers Noel Connors (left) and Walter Walsh (right) at the launch of Beat CF in the South East / Waterford hospital project.

Participants of the Head to Head Walk from Howth to Bray in aid of the Beds for Beaumont Project.

Jennings CF West, An Taoiseach Enda Kenny, Joe Brolly, Tom‡s Thompson, Caroline Heffernan, Norma O'Rourke, Rita Courtney, Caroline McManamin, John Coleman, Noreen Mayor of Castlebar, Irlagh Jennings, Virginia Diskin, Phil Noyles, Edel Fahey and Louise Harty • The refurbishment and upgrading of an outpatient room for CF in Cavan General Hospital (CGH) supported by the Cavan Branch of CFI and the CGH/HSE • The commencement of work for a paediatric outpatient centre in University Hospital Galway (UHG), supported by the CF Galway hospital fund, and the UHG/HSE • Progress towards fundraising for the upgrading of the 4 CF paediatric inpatient rooms in Waterford Regional Hospital and 12 inpatient rooms in Beaumont Hospital, Dublin

Members of the Cavan Branch and Cavan Hospital at the launch of the project. Photo Courtesy of

The new outpatient centre in Lourdes Hospital, Drogheda.

"The Cavan Branch of CFI is really grateful to all its fundraisers and supporters who have made this collaborative venture possible." Rosaleen Cronin, Cavan Branch, CFI

Lorraine Teevan.

CFI Impact & Annual Report 2012/3 New CF Centres

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The New CF Unit in St Vincent's University Hospital The opening of the new unit in St Vincent's Hospital is first and foremost a tribute to people with CF in Ireland and their families, including those of our members who are no longer with us. The New CF Unit in St Vincent's University Hospital The new CF inpatient and daycare unit in St Vincent's University Hospital opened in August 2012, more than 10 years of high profile campaigning by CFI and high profile patient advocates, in particular, Orla Tinsley.

The new Nutley Wing at SVUH.

"This is a major step towards the better treatment of people with CF in Ireland." Philip Watt CEO, CFI

An ensuite room in the new Nutley wing at SVUH.

The Nutley Wing is a seven storey building containing five wards of 20 inpatient single bed en-suite bedrooms. The second floor is dedicated to CF daycare, including 10 ensuite rooms and the third floor has 20 ring-fenced rooms that are only for CF inpatients. Thanks to an agreement signed by the hospital, clinicians and the HSE, the number of inpatient rooms for CF patients can be flexed by up to 34, with two rooms in the Nutley Wing reserved for emergency CF admissions. Survey Shows Inpatient Agreement in SVUH is Working Satisfactorily Almost 90% (89.7%) of inpatients with CF in SVUH surveyed by CFI feel that the CF inpatient admissions policy is 'generally working well'. This is a key conclusion of an online survey that was completed by 39 inpatients with CF who were admitted to SVUH at least once in 2013. Many of the patients surveyed had been admitted to SVUH 2, 3 or 4 or more times during 2013. The survey was completed by almost one quarter of all those with CF who attended as inpatients in the hospital in 2013. The number of CF inpatients in SVUH varies. There is, in general, a lower number of patients with CF in the summer months and a higher number in the winter months though 'spikes' in admissions in other months can also occur. The numbers of inpatients with CF in SVUH varied from 22 in the summer months up to 35 in November 2013.

CFI Impact & Annual Report 2012/3 New CF Centres

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If all 34 rooms in the Nutley Wing had been ring-fenced for CF patient care, there would have been periods where rooms lay empty and could not have been used for other patients in urgent need of them. Philip Watt, CEO of CFI stated that "while the feedback from most people with CF surveyed has been positive, we will not be complacent and there is a minority of inpatients in SVUH who have had a more negative experience. We will continue to closely monitor and address all problems that people with CF have in relation to inpatient rooms in SVUH, or other issues should they arise. The policy adopted in SVUH is pragmatic and generally seems to be working well. It provides a useful model for other hospitals that are developing inpatient care for CF, for example, in Limerick and Cork."

Do you feel the inpatient admissions policy being operated in SVUH is generally working well?

Yes: 89.7% No: 10.3%

Summary of Key Results from the CFI Survey (results apply to those who answered our survey) • 89.7% of PWCF admitted in 2013 agree the SVUH admissions agreement is 'generally working well' • On average, 89.2% of all PWCF admissions in 2013 were to a single ensuite room the new Nutley Wing (the new ward block) • On average, 68% of all PWCF admissions to SVUH in 2013 were in St. Christopher's Ward, which is the ward with 20 ring-fenced rooms for PWCF and which is part of the Nutley Wing • 69.2% of those surveyed stated they were very happy with the standard of room provided, 25.6% felt their room was 'satisfactory' and 5.1% (2 people) were unhappy about the room provided to them While this survey paints a largely positive picture, it should not be inferred that there are no problems.

"While the feedback from most people with CF surveyed has been positive, we will not be complacent" Please indicate your level of satisfaction with the standard of room provided to you.

While it is very encouraging that the inpatient admissions policy is perceived by the PWCF surveyed to be 'generally working well', there are points that will to brought to the attention of management in the hospital.

Satisfactory: 25.6% Yes: 69.2% Unhappy: 5.1%

CFI Impact & Annual Report 2012/3 New CF Centres

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Section 2 “There has been significant progress in lung transplantation and organ donation issues in 2012/13�


Section 2

increasing the rate of lung transplantation CFI play an active role in the Irish Donor Network and are committed to increasing the rate of double lung transplants for people with CF in Ireland The Increased Rate of Lung Transplantation in Ireland CFI have been active in supporting the improved lung transplantation rate in the Mater University Hospital. There were a total of 14 lung transplants in 2012 of which 4 were CF and this more than doubled to 32 in 2013 of which 9 were CF double lung transplants. CFI met with the hospital management and clinicians six times in 2012 and 2013. CFI was also active in 2013 through the Irish Donor Network in the campaign to change the organ donor consent law in Ireland from 'opt in' to 'opt out' and to seek additional resources for the transplant programmes in Ireland. In December 2013 the HSE allocated an additional Û2.9m for 19 additional transplant staff including organ donor coordinators. This followed several meetings with the Minister for Health, James Reilly TD. CFI also acknowledge the important role played by Joe Brolly in raising awareness and supporting advocacy. An 'optout' system of organ donor consent was approved at a Department of Health consultative meeting in November 2013.

The number of CF double lung transplants has more than doubled from 4 in 2012 to 9 in 2013.

"We look forward to this excellent progress being sustained into 2014 and beyond. However, there are also now new challenges for post-transplant care because of this success."

The total number of lung transplants in Ireland also increased from 14 in 2012 to 32 in 2013.

CFI iMPACT & Annual Report 2012/3 Increasing the Rate of LUNG Transplantation

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Section 3 “CFI have been wonderful in supporting us as a family and their help is truly invaluable�


Section 3

Grants & sUPPORT Services CFI continued to make a wide variety of valuable grants and support services available to members in 2012/13 GRANTS AND SUPPORT SERVICES Exercise Grant Scheme The Exercise Grant continues to be very popular amongst members, and indeed many new people have joined the Association to avail of this very important grant. Although gym membership fees and home exercise equipment continue to be the most popular purpose for the grant, we also approved applications for swimming lessons, bicycles, trampolines, pilates and even tai-chi in 2012/3! CFI committed Û127,142 to the scheme for 2012/3 with a total of 478 grants being approved for this period. We look forward to continue making this grant available to members in 2014 and beyond, and will again continue to highlight the benefits of exercise for people with CF.

"We were delighted to receive an exercise grant towards a trampoline to enable our 3 boys with CF to do some fun exercise. It has proved to be a wonderful addition to their exercise regime as they don't really view it as exercise. Even in the wintertime they go out and have a quick bounce before bed! The CFI have been wonderful in supporting us as a family and their help is truly invaluable." Parent of 3 children with CF, Co Donegal.

CFI IMPACT & Annual Report 2012/3 Grants & sUPPORT sERVICES For Members

Clare Meleady, PWCF, used the Exercise grant for Tai Chi classes.

"The Exercise Grant has allowed me to continue my training and made it much easier financially in these recessionary times. I am so grateful to be able to avail of this grant." PWCF, Co Tipperary

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Fertility Grant Scheme The Fertility Grant Scheme is a vital support for members since there are currently no state supports provided for those seeking assisted fertility treatments. This is particularly important considering 98% of males with cystic fibrosis are infertile. CFI allocated Û62,823 to the scheme in 2012/3 Ñ a total of 15 fertility grants were issued in 2013, an increase of two grants from the previous year. At the time of writing we are aware of at least six success stories from this scheme since 2012.

"Receiving the fertility grant was a huge relief to us, without it we simply could not have afforded the procedure. We are eternally grateful to CFI for helping us in this huge step towards creating a family." PWCF, Co Tipperary

Kelli Maples (PWCF), pictured with her daughter Aoibheann, shared her experience of fertility treatment in Spectrum.

Robert Cook, with his son Callum, also benefitted from this scheme.

CFI IMPACT & Annual Report 2012/3 Grants & sUPPORT sERVICES For Members

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Transplant Grant CFI provides financial assistance towards incidental expenses (accommodation, meals and transport) incurred to members and their families who must travel for transplant assessment, transplant and follow-up phases. A total of 49 grants were issued for this purpose in 2012/13. Counselling Referral Service CFI offers a counselling referral service to members who wish to speak with a professional outside of the hospital environment to work through their concerns and difficulties. This service is also made available to family members following bereavement of a person with Cystic Fibrosis. All counsellors are fully accredited with either the Irish Association for Counselling and Psychotherapy or the Irish Association of Humanistic and Integrative Psychotherapy. A total of 59 referrals were received by CFI in 2012/3 and Û13,776 was allocated to support members for this purpose. Distress Fund CFI offers financial assistance to families following bereavement of a person with CF to help towards expenses incurred. CFI has limited funds available under this scheme to lend assistance to families of children with CF and adults with CF who are experiencing certain difficulties or financial hardship. A total of Û73,222 was issued to members through this scheme in 2012/3.

CFI IMPACT & Annual Report 2012/3 Grants & sUPPORT sERVICES For Members

"I cannot fully express in written word how supported our family felt by CFI following the tragic loss of our sister. I received incredible support and understanding and was immediately offered free counselling Ñ I was overwhelmed by this and started to feel so relieved already" Sibling of PWCF, Co Meath

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Positive Feedback from our Members about the Services Provided by CFI Grants and Support Services Survey, October 2013 CFI carried out a survey in October 2013 to seek feedback from members on our grants and support services. There were 261 responses to the survey of which 49% were parents, 38% were PWCF and 8% were healthcare professionals.

'Do you read the CFI newsletter Spectrum?'; over 95% of members answered 'Yes'.

Some key findings include: • High satisfaction levels on the advocacy and services provided by CF Ireland, but also the need for us to do more on particular issues, including access to education and employment

Yes: 95.1% No: 4.9%

• Social welfare, medical and treatment information, education and travel are the issues that our members most often seek advice on (parents and PWCF) • Communications with are members are highly valued, especially through Spectrum, but more 'face to face contact' is sought • The 50th year events were very well received by most of our members and a national remembrance and thanksgiving event shout be considered in future • Recognition of the work we have undertaken on transplant issues, but further work is required in relation to post-transplant support 68.5% of PWCF and 76.7% parents reported contacting the head office and/or CFI advocates for information and advice. Most queries related to benefits and entitlements followed by information on medical issues/treatment, education and travel. Over 80% of members felt that the advice and support they received was 'excellent' or 'good', which is very encouraging.

"It is nice to know that there is always someone to call if you have a problem." PWCF In response to the question 'Do you feel that CFI plays an active role in advocating for improved CF services in Ireland?' 92% said ' Yes' Ñ a huge focus of our work in recent months and indeed years has been to improve CF services across Ireland. Access to flexible employment, the restrictions with the Disability Allowance when cohabiting, medical cards issues and supports with fertility treatment were highlighted by people with CF as issues which CFI will begin addressing in 2014.

CFI IMPACT & Annual Report 2012/3 Grants & sUPPORT sERVICES For Members

"I really like Spectrum; I find it very informative and like reading all sections." Parent

'Do you feel that CFI plays an active role in advocating for improved CF services in Ireland?' 92.7% of respondents said 'Yes'.

Yes: 92.7% No: 7.3%

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Section 4 ““I think the 50th anniversary was celebrated in a dignified and understated way”


Section 4

Celebrating 50 years Cystic Fibrosis Ireland is one of the oldest patient advocacy groups in Ireland and one of the first CF patient groups in Europe Marking our 50TH yEAR Cystic Fibrosis Ireland was formed in 1963 by a small group of parents with the support of the few doctors that were treating people with CF at the time. The resolve of the small group of people who attended this first meeting has continued to this day. To mark our 50th year in 2013, a number of events and initiatives took place to recognise this important milestone. Remembrance and Thanksgiving Service A remembrance and thanksgiving service took place in the Mary Immaculate Church in Rathmines on Saturday 23rd February 2013. This service allowed us the opportunity to remember and give thanks to those founders and all the subsequent members and supporters of our Association, people with CF, their families and friends, the doctors, nurses and clinical teams and all those who have contributed to our work over the past 50 years. A Special Guest Address was provided by Professor Muiris X. FitzGerald, the first CF adult consultant in Ireland in St Vincent's University Hospital. The Dublin Gospel Choir also performed at the event and a Service of Light ceremony combined to make the service a very memorable one indeed.

Back L-R: Prof Muiris X FitzGerald, Colm Warren, Philip Watt, John Coleman, Cubby O'Connor. Front L-R: Kevin O'Connor, Bridie Maguire and Anne O'Dwyer.

"The courage of the young men and women with CF and their families whose fortitude and good humour in facing adversity profoundly moved me." Prof Muiris X FitzGerald

Prof Muiris X FitzGerald speaking at the ceremony.

CFI Impact & Annual Report 2012/3 Celebrating 50 years

Patricia Tinsley and Michael Hickey.

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Launch of 'For The Roses' 50th Anniversary Book Launched in April 2013, 'For The Roses' tells the inspiring story of the evolution of CFI and provides an insight into the most important events that shaped the story of the Association and CF care in Ireland. It pays tribute to two people who could be described as the 'guiding lights' of CFI Ă‘ Anne O'Dwyer, the first Chairperson and Bridie Maguire, who was involved with the Association for thirty years, both as a volunteer and then as the first CEO. A constant theme that emerges from the book is the power of people to effect change by working together in the face of adversity.

Jason Davies and a colleague representing Novartis who sponsored CFI for production of the book, with Philip Watt, CEO, CF Ireland and John Coleman, Chairperson, CF Ireland.

Katie Murphy, PWCF, at the book launch in April 2013.

Cork Branch Celebrate Their 50th Anniversary The Cork Branch of CF Ireland celebrated their 50th anniversary in 2013 at the Rochestown Park Hotel. Pat Wilkinson and a group of friends started a support group and the Southern Branch grew from there. Within a short time Maura Hallinan joined this group and has been the longest serving member on the committee. Also acknowledged at the event were Dr Tess O'Halloran and Dr. Barry, who founded the Cork clinic was in the mid 1960s. The first Specialist CF nurse appointed in Cork, Cathy Shortt, and Liaison Officer for the Cork Branch, Cathy Carlton, were also thanked and acknowledged at the event.

Con O' Sullivan, Philip Watt and Marian Barrett at the 50th Anniversary event in Cork.

Refreshing our Branding As part of our 50th year, our name was also shortened to 'Cystic Fibrosis Ireland' (formally the Cystic Fibrosis Association of Ireland). As part of this process, our logo was refreshed, while still retaining our well known kite sign, with the parent and child icons. Our website was also revamped and made more user friendly for members, with quick access links to popular sections.

CFI Impact & Annual Report 2012/3 Celebrating 50 years

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Section 5 “CF Ireland is committed to funding research to advance our knowledge and understanding of Cystic Fibrosis�


Section 5

Research Research on CF bugs, depression and CF, service reviews at CF centres, and experiences of parents with the newborn screening process were the focus for 2012/3 Research Funded by CFI and the Health Research Board CFI currently funds two research projects in association with the Health Research Board (HRB). These projects went through a rigorous peer-review process and were approved by a HRB chosen steering committee as being projects that warranted funding. The projects are based in University College Dublin and University College Cork. A brief overview of each is included below. The Role of Mucus and Mucins in Mediating Pseudomonas aeruginosa Colonisation of the Cystic Fibrosis Lung Principal Investigator: Dr. Marguerite Clyne Institution: UCD School of Medicine and Medical Science Co-Applicants: Dr. Valerie Urbach, National Childrens Research Centre, Dr. Paul McNally, Our Lady's Children's Hospital and Dr. Barry Linnane, University Hospital, Limerick. Summary Individuals with CF get bacterial infections in the lung which leads to a decline in lung function and to respiratory failure. Pseudomonas aeruginosa, a bacteria which causes a lot of infection in CF patients, lives in mucus that accumulates in the lungs of people with CF. In this environment it forms biofilms, clusters of bacteria coated in material that holds them together, which makes the bacteria very difficult to treat with antibiotics. The aim of this study is to see how the bacteria behave when grown in the laboratory with cells that secrete mucus similar to the mucus in the lung. The team hope to determine the role of mucus in promoting biofilm formation by the bacteria and in developing antibiotic resistance. Binding of bacteria to mucins, large proteins present in mucus, is thought to be a mechanism that helps the bacteria to prevent being removed by the natural defence system of the patient. The group aim to test the potential of purified mucins to prevent bacteria from sticking to mucus. By determining the role of mucus and of specific components of mucus in promoting bacterial infection and the formation of biofilms, it may be possible to look at ways to develop new molecules, which would be alternatives to antibiotics that would prevent infection.

CFI iMPACT& Annual Report 2012/3 Research

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National Prevalence of Depression and Anxiety in Patients with Cystic Fibrosis and Parents: Impact on Health and Quality of Life Principal Investigator: Prof Eileen Savage Institution: UCC Summary This is an Irish national study to find out how many patients with (aged 12 years and over) and parents of children with CF experience depression and anxiety and how they influence health outcomes such as pulmonary function, weight, and quality of life. A similar study has been carried out in various European countries as well as the US and Canada (known as the TIDES study). To date, the extent of depression and anxiety among people with CF and their parents is not known, and so this study is the first of its kind in Ireland. The study will also include a measure of positive health and well-being. Adults and children over 12 years of age with CF and parents of children with CF from birth to 18 years will be invited to take part in the study. They will be asked to complete questionnaires that measure depression, anxiety, mental well-being, and quality of life. Health information (i.e., lung function, body weight, admission to hospital) will be collected from patients' medical notes. The findings will help us to draw attention to the psychological and emotional aspects of living with CF which will have implications for clinical support, resources and services.

Needs Assessments at CF Centres A Needs Assessment for Dedicated CF Inpatient Beds in Beaumont Hospital Beaumont Hospital is one of three major centres in Ireland for adult Cystic Fibrosis care, yet at present there are only 4 inpatient rooms for CF patients. A detailed needs analysis of the inpatient needs of adults with CF in Beaumont Hospital was commissioned by CFI in the summer of 2012. This work was undertaken in partnership with a local charity, CF Hopesource.

Counties of residence (percentages) for current CF patients in Beaumont Hospital. Source: CF centre, Beaumont Hospital.

CFI iMPACT& Annual Report 2012/3 Research

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The report outlined the current and projected need for dedicated inpatient beds for CF patients in Beaumont Hospital. On the basis of current and projected patient caseload, and drawing from European consensus on standards of care, there is a current need for 12 dedicated inpatient beds in Beaumont Hospital. This need will increase to 15 beds in the medium term and 20 beds in the longterm. A number of proposed options for meeting these dedicated inpatient beds were also outlined. The minimum requirement of specifications include single rooms with ensuite facilities for all patients, the establishment of a dedicated CF ward, rather than individual rooms located throughout different hospital wards, and air management systems to achieve optimum infection control. Hospital management endorsed the report and CFI established a steering group to developed a fundraising campaign (Beds for Beaumont) to raise the necessary funds for this major capital project Ñ it is estimated that Û2.5 million will be required to achieve this. The full report can be accessed through our website: www.cfireland.ie/index. php/cfservicesreports Cavan Needs Assessment A proposal for a Cystic Fibrosis shared care centre in Cavan General Hospital and inclusion of dedicated outpatient and inpatient CF facilities in the development plan for Cavan General Hospital was commissioned by CFI and published in April 2013. This research was carried out to establish the current and projected needs for dedicated inpatient beds for Cystic Fibrosis patients in Cavan-Monaghan Hospital. The report indicated that there are 16 paediatric patients and 12 adults accessing services from Cavan General Hospital on a shared care basis. On the basis of the current CFRI registry figures for 2011, there are 37 PWCF in the County Monaghan and Cavan area. 21 of these are younger than 18 years of age, and 16 are 18 years of age or older. It is conservatively estimated that within a five year period, the paediatric patient caseload could be 18-22 in number and there could be 22-24 adults accessing services within the hospital. The report proposed that the development of dedicated facilities for PWCF comprising 2 inpatient beds for adults, 2 inpatient beds for paediatric patients and a dedicated outpatient facility should be pursued. The report also recommended that as part of the National Clinical Programme for Cystic Fibrosis, Cavan General Hospital should be specifically designated as a centre for shared care, given the current and projected numbers attending the service. Since publication of this report, building developments have progressed for facilities for PWCF at Cavan General hospital with the development of two outpatient rooms (see Section two for more information).

CFI iMPACT& Annual Report 2012/3 Research

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Newborn Screening for Cystic Fibrosis: A Longitudinal Mixed-Methods Study of the Psychosocial Experiences of Parents of Screening Detected Cases and Carriers, and Clinically Diagnosed Cases This study was conducted as part of the Doctoral Programme in Clinical Psychology at University College Dublin (UCD). The Principal Investigator was Dr Dubhfeasa Slattery (Consultant Respiratory Paediatrician, Temple Street Children's University Hospital). The project was supervised by Dr Barbara Dooley (Senior Lecturer, School of Psychology, UCD) and Dr Zai Edworthy (Senior Clinical Psychologist, Temple Street Children's University Hospital). The researcher was Dr Dermot Ryan (Doctoral Programme in Clinical Psychology, UCD, and the HSE Midlands Area). Newborn screening (NBS) for Cystic Fibrosis (CF) was introduced in the Republic of Ireland on 1 July 2011. This study aimed to examine the psychosocial implications of newborn screening for CF in an Irish context. It examined parents' experiences of and psychological adjustment to receiving a screeningdetected diagnosis of CF in their child. The experiences of these parents was compared with those of parents whose children were diagnosed clinically. The project also examined the psychosocial impact of having children identified as CF carriers through the NBS process. The study used a longitudinal mixed-methods design. Parents were recruited with the generous support and assistance of staff on the CF teams in the six centres that screen for CF in the Republic of Ireland: Temple Street Children's University Hospital; Our Lady's Children's Hospital, Crumlin; the National Children's Hospital, Tallaght; Cork University Hospital; the Mid-Western Regional Hospital, Limerick; and University College Hospital Galway. A total of 157 parents were recruited at baseline and 65 of these were followed up at 6 months. The study instruments included standardised measures of distress, family stressors and strains, coping and social support, as well as a semi-structured interview. The interviews were audio-taped. Data analysis is ongoing and the study findings will be examined in relation to their implications for clinical practice, policy and future research in this area. The fieldwork was made possible with the generous support of Cystic Fibrosis Ireland.

CFI iMPACT& Annual Report 2012/3 Research

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Section 6 “Dublin was the destination for a major conference on CF in 2012, which attracted experts from all over the world�


Section 6

Major Events Dublin was the destination for a major conference on CF in 2012. Other important events include our National Awareness week and fundraising events such as 1 in 1000 European CF Society Conference In 2012, the 35th European Cystic Fibrosis Society (ECFS) Conference was hosted in Dublin. This is a very prestigious event on the annual calendar of experts in CF and scientific and clinical teams from all over the world came to discuss, debate and listen to all the latest developments in CF. The event took place in the Convention Centre Dublin and was well attended by over 2,700 delegates. In conjunction with the conference organisers, CFI organised and co-ordinated volunteers for the event to ensure its smooth running. Many of our members kindly volunteered their time to help out and were rewarded by being able to access to some of the conference talks. CFI, in conjunction with CF Europe, CF Worldwide and the ECFS, also hosted a Joint Symposium to mark the official opening of the event themed 'Improving Access to Quality Care in CF: How Patients & Professionals can Work Together!'. A wonderfully illustrated book called 'School is Fun!' written by Louise Byrne and parent of a little girl with CF, was also launched during the event. Following the success of her first book 'Can You See What I See?', Louise wrote this second book to continue the story of the engaging superhero with CF as she returns to explore all the fun that school days offer. CFI also received wonderful feedback from our colleagues abroad, thanking us for the warm welcome and memorable visit from their time here in Dublin.

Many of our members volunteered at the ECFS conference in Dublin.

"I want to thank you and your whole team for the very warm welcome and all the help and support to make the Dublin conference one of the best ever!" Karleen De Rijcke President, Cystic Fibrosis Europe,

Louise Byrne, author of 'School is Fun' with Philip Watt, CEO CFI, at the book launch.

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cfi aNNUAL Conference The CFI Annual Conference continues to draw big crowds every year with people from all over the country joining us for this busy weekend. In 2012 our Annual Conference was held in Whites Hotel, Co Wexford, and in 2013 we travelled to Killashee House Hotel in Naas, Co Kildare. In 2012, CFI Fundraising/Advocacy Awards were given to the PWCF Adult Group, the Galway Branch award was accepted by Chairperson Mary-Lane Heneghan, and the award for TLC4CF was accepted by CatrÂ’ona Hayes. A Special Recognition Award was also presented to Prof Gerry McElvaney, CF Consultant at Beaumont Hospital, for his outstanding contribution to CF services in Ireland over many years. In 2013, outstanding contribution awards were presented to Bridie Maguire, Anne O'Dwyer and Prof. Muiris X FitzGerald in recognition of their pivotal roles and commitment in being the driving forces in establishing the Association. A special media recognition award was also presented to Joe Duffy for the exceptional work of Liveline in highlighting CF issues over many years.

Rory Tallon, PWCF, with his wife Sarah and daughter Florence at the CFI Conference in 2013.

Award recipients in 2013. L-R: Prof. Muiris X FitzGerald, Bridie Maguire, Anne O'Dwyer and Joe Duffy.

With thanks to our sponsors, Novartis, Chiesi, Baxter Healthcare and Vertex Pharmaceuticals, which has allowed us to subsidise the cost of attending this conference for our members.

CFI Impact & Annual Report 2012/3 Major events

Rose of Tralee, Tara Talbot presenting a A Special Recognition Award to Prof Gerry McElvaney, CF Consultant at Beaumont Hospital in 2012.

L-R: Ed Owen, CEO, CF Trust, Joe Duffy, Alex White TD and Philip Watt, CEO CFI.

"I must compliment CFI for an excellent conference, which took a lot of hard work to ensure it ran smoothly. It was both a pleasure and a learning experience to attend." Parent

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nATIONAL aWARENESS wEEK CFI National Awareness week continues to be launched on the eve of our Annual Conference. This is the most significant week for CFI in terms of creating awareness of CF at a national level, and also with respect to the huge amount of fundraising that takes place by Branches and friends of the Association around the country. The national 'flag' or collection day is also when our 65 roses emblems are on sale in shopping centres around the country Ñ co-ordination of this event would not be possible without the large number of dedicated volunteers and Branch members who support CFI.

Megan Canavan (PWCF, 10 at the time) appeared on billboards during our National Awareness Week in 2013! [447] CF 48 Sheet (FA).indd 1

21/03/2013 16:05

The '65 Roses' emblem continues to be the design for the pins sold during our National Awareness Week.

CFI wishes to acknowledge the fantastic ongoing support of JCDecaux during our Awareness Week. JCDecaux have supported the Association in our public awareness programs over many years and the extent of our campaign would not be possible without their support.

Major Fundraising Events 1 in 1000 Founded in 2010 by Zoe Woodward and family after the diagnosis of daughters Emily and Lana, the family wanted to do something for CF together Ñ they then rallied up a group of 1,000 women into doing something incredible. Over the past 4 years, the CFI One in 1000 appeal has raised a whopping Û600,000 for people with Cystic Fibrosis in Ireland. These funds have enabled CFI to fund a new state of the art 4 bed ward for children in Crumlin Hospital, to provide support and services for people with CF and to fund new and additional isolation beds and treatment units nationwide. The campaign is a drive to recruit 1,000 women to run for CF, and continues to be a huge success.

CFI Impact & Annual Report 2012/3 Major events

Supporting the 1 in 1000 campaign in 2012 were 'Rose of Tralee' Tara Talbot, TV3 'Xpose' presenter Karen Koster, and Rubberbandits/Republic of Telly Star Madeline Mulqueen.

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Community Fundraising There are too many community fundraising events to acknowledge in this report, but in particular CFI would like to acknowledge the ongoing commitment of the organising members for the annual Paddy Kieran's walk, the accomplishment of Gerry Walker (PWCF) in completing the 50 Years, 50 Peaks challenge, and finally to Gerard Fay for his trojan efforts in running 100 marathons for Cystic Fibrosis in 2012/3!

Paddy Kieran Walkers pictured in Poland in 2012.

Gerry Walker on top of the British Isles.

Fundraising for Hospital Projects The Beds for Beaumont fundraising committee organised a Head to Head walk from Howth to Bray in September 2013, which was a huge success. Fundraising for the Waterford Regional Hospital project made fantastic progress over 2012/3 and over Û15o,000 was raised for improving hospital facilities for people with CF attending Waterford hospital. CF West is committed to building a specialised respiratory outpatient unit and daycare centre facility for people with CF in the West of Ireland and is costing Û1,300,000. CF West is a dedicated regional build fund established in the Mayo area to fundraise for this project and which also includes the Mayo Branch of CFI.

The Head to Head Walkers in Howth, September 2013.

CFI Impact & Annual Report 2012/3 Major events

The 2013 Golf Classic at Mount Juliet in aid of the Waterford Project was another great success.

Challenge the Greenways raised just under Û50,000 for CF West over 2012/3.

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Examples of Some Fundraising Events A variety of weird and wonderful fundraising events continue to take place for CF. Most notable in the past few years include a 'Trash the Dress' event where over 420 ladies trashed their wedding dresses on mud and water slides all in aid of CF! Another group of members took part in a Santa Dash on Clontarf beach in Dublin Ñ what better way is there to fundraise and kick-off the festive season in the process. A Neutron Walks Into a Bar, is a collection of facts, definitions, explanations, biographies and jokes guaranteed to quench a thirst for knowledge, discovery and humour that's out of the ordinary. All proceeds of this book go to research projects being funded through CFI. From head shaves to tattooing, bed pushes to Zumbathons, we really do have a wonderful and imaginative group of supporters out there.

Trash the Dress for CF took place in August 2012 where ladies 'trashed' their wedding dresses for CFI.

Humphrey Jones, Maria Delaney (PWCF), Aoibhinn N’ Shœilleabh‡in and Paul O'Dwyer at the book launch 'A Neutron Walks Into a Bar'.

The Nolan family and their daughter Ruth (far right) who took part in the Santa Dash in December 2012!

Corporate Fundraising Most companies and organisations have a social responsibility department which very often can provide support and/or funds for charities and not-forprofit organisations nominated by their employees. There have been many members who have nominated CF Ireland in their workplaces through corporate social responsibility programmes over the past 2 years, and we would like to thank them most sincerely for their support and generosity. In particular, we would like to acknowledge McCabes Pharmacy, which chose us as their Charity of the Year for 2012/3, and Investec, which held a hugely successful charity day in 2013 and raised Û40,000 for CFI.

Michael Cullen (CEO Investec Ireland), Orla Ni Cholmain, Philip Ahearne and Katie Murphy (CFI).

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Annex “Our work and impact would not be possible without the support of our Board”


Annex National Executive Committee 2013; CFI Board

John Coleman, Chairperson CFI

Cyril Gillen, Incoming Vice Chairperson

Patricia Duffy Barber, Secretary, CFI

David FItzgerald, Treasurer CFI

Mary Lane Heneghan

Brendan Lonergan

Tess Brady

Louise Harty

Carmel Delaney

CatrÂ’ona Hayes

Mary McCarroll

Christine Drummond

2013 NEC members not photographed include Denise Taylor, Deborah Kett, Iris Murphy and Marion Barrett.

Fiona Bodels

Committee members who retired in 2013 include Tracey O'Kennedy, Se‡n O'Kennedy, Esther L'Estrange, Kenneth Flanagan, Gerard Menihane and Karen Dowling.

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Staff Member

Position

Philip Watt

Chief Executive Officer

Helen Whitty

Operations Manager

Martin Cahill

Fundraising Manager

RIP Dec 2013

Maria Caldwell

Fundraising Manager

Commenced Dec 2013

Eufemia Solinas

Senior Fundraising Co-ordinator

Rosie Begley

Fundraising Co-ordinator

Resigned Dec 2013

Ciara Enright

Fundraising Co-ordinator (1 in 1000)

Resigned Dec 2013

Suzanne Brock Alica May

Fundraising and Communications Co-ordinator Services and Information Officer

Katie Murphy

Research and Development Officer

Tom‡s Thompson

Advocacy Officer (part time)

Caroline Heffernan

Advocacy Officer (part time)

Agata Adamaszek

Finance Officer

On maternity leave

Jolyn Mulvey

Finance Officer

Maternity leave cover

Erin Sugrue

Regional Development Officer, TLC4CF

Commenced Dec 2013

CFI Impact & Annual Report 2012/3 NEC and staff

Notes

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Notes


Help the CFI Ireland LIFE SUPPORT Campaign Because Ireland has the highest prevalence of Cystic Fibrosis in the world, many people will know someone who is living with Cystic Fibrosis. However, fewer may know how tough it is to stay well when you have CF and the support that Cystic Fibrosis Ireland provides to help people with CF stay well. There is a constant daily battle for people with CF to maintain their health, often with scores of pills and other medications to take every day and a challenging regime of exercise and physiotherapy that will take at least 2 hours every day, even for those with CF who are comparatively well. For those of our patients who are less well and who may be constantly dependent on oxygen; waiting for a lung transplant or who will spend weeks as an inpatient after a worsening of their condition, the daily treatment regime is much longer and even more of a struggle. There is a constant battle for funding for CF hospital facilities; for research, for equipment and assisted living. Those with CF and their families contribute daily through determination and perseverance of treatment, but with cutbacks we increasingly need public support to maintain crucial CF services. With the support of Cystic Fibrosis Ireland and the current advances in medication and our wonderful care teams in CF centres, more people with CF can now hope to be a mum or a dad, perhaps even a grandparent Ñ a dream that was impossible when CFI was set up in 1963 and when children with CF were not expected to reach primary school. Help us through your donations for CF Life Support. Donate Details Text HelpCF to 50300 to donate Û2. 100% of text cost goes to charity across most network providers. Some providers apply VAT which means a minimum of Û1.63 will go to CF Ireland. Service provided by LikeCharity 01 4433778.

Cystic Fibrosis Ireland 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

CFI Impact & Annual Report 2012/3