SPEAKERS 2025
John Wall
Having lived with an advanced cancer diagnosis for the last several years, I'm grateful to be in a position to share my lived experience, so that others may learn from it & I from them.
The patient voice is an important one & I'm a fervent advocate of using it responsibly & appropriately wherever possible. Advocacy can be a lonely & challenging place at times, but when results are yielded, the effort is surely worth it.
Outside of all this I'm an Air Traffic Controller by profession. Not sure which is the more difficult!
Sandra Broderick
Sandra Broderick is the first Regional Executive Officer to be appointed by the Health Service Executive and took up post in December 2023. Sandra is the
accountable officer at Health Region level, responsible for the delivery of high-quality, safe, and accessible Health and Social Care services for a
population of 420,000 in the Mid West, leading a workforce of 10,000 staff.
A qualified nurse with the NHS since 2004, Sandra is a passionate advocate for a universal, equitable
health system that provides safe care in the right place at a convenient time for patients.
Sandra has worked in Healthcare her entire career, returning to Ireland in 2018 to join the HSE as
Assistant National Director managing high quality health and social services for older people.
Sandra, the first REO appointed in the HSE reports directly to the CEO of the organisation, Bernard
Gloster, and has full responsibility for all Acute, Community and Public Health Services across the
Mid West.
Bernard Gloster
Bernard Gloster has been Chief Executive Officer of the HSE since March 2023. He has worked in health and social services for almost 37 years. He re-joined the HSE from the state Child and Family Agency Tusla where he served as Chief Executive Officer from September 2019. Prior to that, he held several senior management positions within the HSE including Chief Officer of HSE Mid-West Community Healthcare, and he worked in and managed in both community and acute hospital operations. He is a social care worker by profession, holds an MBA from Oxford Brookes University and an MSc in Management Practice from UCC. In 2024 he was awarded the inaugural Alumni Award of the Munster Technological University.
Linda Sice Brogan
Linda Sice Brogan is Chief Executive Officer of Galway City Partnership and a
passionate supporter of meaningful patient and public involvement in health and
community services. As a dedicated Patient and Public Partnership (PPP) representative, Linda brings a wealth of experience in fostering collaborative engagement between service users, professionals, and policy-makers.
Linda co-designs and delivers projects that prioritise the voices of patients, families, and the wider public. Through her work with the National Screening Service (NSS), she has been involved in approaches to embed patient experiences at the heart of planning, evaluating, and improving screening services.
Linda is an advocate for the more socially vulnerable in our communities. She champions the integration of lived experience into decision-making, upholding the
principles of transparency, respect, and collaboration within every aspect of the PPP agenda.
Linda holds a master’s degree in Community Development and a post-graduate
diploma in Leadership in Health and Wellbeing.
Norma Deasy
Norma Deasy is a communications manager with the HSE's National Screening Service. She develops patient information and works with its Patient and Public
Partnership network.
Norma knows that people in Ireland, about 1 in 4, have challenges with health literacy. She focuses her work on improving the health services responsiveness to
health literacy. She uses plain language to help with this. She knows it makes information easier for people to find, understand and use. Her work creating
information with patients and the public also helps. She's confident that sharing clear information, developed with the intended audience, improves people's health.
In 2019, the National Adult Literacy Agency recognised Norma as a plain English champion’. An award for promoting clear communications in the workplace.
Norma has a degree in Languages and Business, a post-graduate diploma in Public
Relations and a master’s degree in Health Promotion and Project Management.
Clara Meehan
Clara Meehan, is an Occupational Therapist who graduated from Brunel University in London in
1998. She is currently employed as a Health and Social Care Lead with the Roscommon Service
Improvement Team in Mental Health. Her role on the team is to represent the HSCP’s within the
service and develop service improvement initiatives based on service user/family member feedback
and engagement. Clara also has lived experience as a family member and is passionate about co-
production in the development and evaluation of services in Mental Health. Clara recently graduated
from the University of Galway with a Postgraduate Diploma in Health Promotion and has a particular
interest in community development and equity in healthcare. Contact details: clara.meehan1@hse.ie
Patient Partner
Co Presenter
Fiona McKernan
Fiona McKernan is a Programme Manager with the Office of Mental Health Engagement and Recovery (MHER). Fiona has worked in Mental Health Services since 2002 when she graduated as a Psychiatric Nurse. She has been actively involved in the area of supporting the development of a whole systems approach to recovery within Mental Health Services since 2011, leading on various service initiatives in the Kilkenny Mental Health Services and as a Service Reform Fund (SRF) Project Lead, in what was CHO5. Fiona joined the Office of MHER in 2021 and leads on the area of Recovery Education. Fiona has a passion for co-production/ co-creation and believes that meaningful engagement through partnership with all stakeholders is integral to cultural and practice change within health services
Joe Bowden
Joe Bowden, Patient Representative, has been a member of the St James’s Hospital Patient Representative Council (PRC) for the past 7 years. He has been attending St James’s Hospital for 11 years and joined the PRC as a way to give a little back to the hospital for the care he received and to help other patients. He has a keen interest in diabetes and antibiotic overuse. He participates in workshops, sharing his wound management and tissue viability lived experience and is a member of the RCSI Pressure Sore Avoidance Advisory Panel.
Maria Kane
Maria Kane has 34 years’ experience in St James’s Hospital. She is a RGN and has an MSc in Nursing and
qualifications in respiratory nursing, nurse midwife prescribing, leadership & quality and patient safety
complaints advocacy. While working at the frontline she designed, established and delivered innovative nurse
led services for respiratory patients.
She is currently working as a Quality Manager in St James’s Hospital, with responsibility for leading, supporting and advancing the hospital’s person-centred care programme.
Together with the Patient Experience Office Team she is responsible for the management of patient feedback,
facilitating the hospital’s patient representative council and enabling partnership and engagement with
patients and their families. Maria has overseen the hospitals’ participation in the National Inpatient Experience Survey and is passionate about ensuring the patient’s voice is heard and represented at all forums to inform quality improvements.
Joe Ryan
Joe currently serves as the National Director of Public Involvement, Culture and Risk Management at the HSE. This entails working in close partnership with patients, service users and colleagues across the health system to drive patient and public involvement in the co-design and co-production of health and care services. Joe also leads the organisation culture function to support the wider system in developing and promoting a positive, high quality, patient, service user and public centred service culture. As Chief Risk Officer Joe leads a team, who support the emerging Regions and national centre in risk management, compliance, data protection and protected disclosures.
In his spare time Joe is a volunteer emergency first responder with the National Ambulance Service
in his local community north of Dublin.
Damien McCallion
Damien McCallion is the HSE’s Chief Technology and Transformation Officer with responsibility for
technology, information security, data governance and digital development. Damien is also the HSE
Director for the Sláintecare Programme, overseeing the HSE’s medium to long term transformation
programmes. Damien is also Deputy CEO of the HSE.
Damien was the HSE’s Chief Operations Officer from mid 2022 to June 2024, responsible for oversight of
day-to-day health and social care operations in the HSE and over 100,000 staff.
He took on a lead role in the COVID-19 pandemic response as the head of the successful Vaccination and
Test & Trace programmes, a key part of the nation’s public health response to the pandemic. He held a
variety of roles prior to this within the HSE, from Screening Services, Head of the National Ambulance
Service, Head of ICT, National Director for Emergency Management and Special Delivery Unit, and an
Area Manager for Health Services in the North West. He has also had a lead role in cross border health
programmes, as Chair and Director General of CAWT, and the organisation Safefood as Deputy Chair, for
a number of years.
Prior to working in the Health Service he worked for ten years in the airline industry. Damien originally
qualified from Letterkenny IT in computing and subsequently completed an MSC in Innovation
Management from University of Ulster and Letterkenny IT.
Prof. Richard Greene
Richard is a graduate of Trinity College Dublin, gained much of his clinical experience in the Coombe Womens Hospital, Dublin followed by a Fellowship in Maternal-Fetal Medicine in Thomas Jefferson University Hospital, Philadelphia, USA. On his return to Ireland in 2001,
he joined UCC as Senior Lecturer/Consultant in Obstetrics and Gynaecology: and took up his current posts as Director of the National Perinatal Epidemiology Centre (NPEC) and Professor of Clinical Obstetrics, UCC, in 2007. Richard was centrally involved in commissioning and establishing the new maternity services at CUMH and continues to
maintain a senior management position there.
The NPEC has become a key component of the national maternity service, leading to
significant learning and change from auditing outcomes for mothers and babies. His research interests include maternal-fetal medicine, epidemiology, health services research incorporating quality of service and the use of Information Technology towards the improvement of healthcare.
Richard has been a mentor and supervisor to many students, medical trainees and research
students undertaking Masters (8) and PhD’s (9 graduated; 4 current) and post-doctoral
researchers (4).
Richard is the HSE’s CCIO working across the Chief Information Officer and the Chief Clinical officer functions, assisting the multidisciplinary working for a digital health future.
Current key motivation - believes digital data and information flow between patients/service
users and healthcare staff is the key enabler for healthcare transformation in Ireland.
Personal Interests:
Family time; Walking in Irelands hills and Mountains; Out on the water – Surfboard, Kayak,
any floating craft particularly Sailing – (currently other people’s boats)
Deirdre Nally
Senior Social Work Practitioner
Jack Kenny
Co Presenter
Martina Lanigan
Martina has been working in both the statutory and non statutory disability sector for almost 25 years and is committed to the promoting inclusion and enhancing the lives of people with a disability, their families and advocates. Martina Lanigan works with the HSE as the National Day Services Coordinator in Adult National Disability Services, Access & Integration. Martina was instrumental in developing the mechanisms to implement the HSE’s day services policy - New Directions from its initiation to present day. - Martina’s with responsibilities include leading out on the on the development of the an Outcomes Focussed Monitoring System for adult day services that includes people with a disability as assessors. Martina also works within the team that manages the annual national process for school leavers with a disability and young people graduating from rehabilitative training programmes each year that require a HSE funded day service.
Martina works closely with people supported, HSE colleagues across the country, and service providers to create supportive environments that encourage new developments, innovation, service and process improvements, bringing a person centred focus to all the work.
Jessica Curtis
Jessica joined Genio as a National Programme Manager in 2024, having previously worked
as a Senior Project Manager in the HSE’s Mental Health Engagement and Recovery Office
(MHER) and a Senior Manager in Social Innovation and Community Development. She is responsible for a portfolio of work streams related to Lived Experience with Genio’s partners in HSE Disability, MHER, the Housing Agency and the HSE Social Inclusion Office.
Jessica has more than 20 years’ experience in innovation, engagement and strategic
planning in both statutory and voluntary sectors. Her career has focused on change and innovation roles in health, community and social spaces.
Jessica holds an MSc in Mental Health & Social Inclusion, as well as qualifications in speech
and language therapy, design thinking, workplace wellbeing and theatre. Jessica is passionate about the value of lived experience presence, literacy and expert applications.
She believes that the successful implementation of person-centred policies and roadmaps
like HSE’s Sharing the Vision, Better Together and the WHO roadmap for integrating lived experience will significantly improve both the patient and the health worker experience.
Ber Grogan
Ber is an activist, a change-maker and a woman who has eperienced the mental health services in Ireland. She has worked in the charity sector for two decades and has volunteered across many causes.
In recent years, Ber has been a leader in mental health, through her work as Policy and Research Manager in Mental Health Reform. Though she has moved into the housing and homeless sector, and dignified mental health care. She doesn't like the identity of patient because her mental health difficulties are part of what makes her so empathetic. After years of
self-advocacy, a woman’s health treatment is making a significant impact on her wellbeing.
Ber wants to see change across the health services, wants people to access their rights through the Assisted Decision-Making Capacity Act and wants medical professionals to respect the voice of people accessing services.
Laura Kavanagh
Research and Advocacy Manager at IPOSSI and Co Chair of the Patient Forum
Geraldine O'Brien
General Manager Patient and Service User Experience
Paddy Flavin
I was born, the eldest of 6 children in Waterford City in December 1949, and at the age of 2 we moved to Tramore, where I was reared until the age of 17.
In August 1967, I packed my bags and headed for Kildare and the Curragh Camp where the Irish Defence Forces training camp was located. I enjoyed it so much there, I stayed for the next 30 years
In 1968 I met the girl who was to become my wife and we married in 1971. Over the following 16 years we developed our family of 5 (3 girls & and 2 boys). And in turn, they have given us 6 beautiful grandchildren. We will celebrate 54th Wedding Anniversary this year. One of the regrets I had rearing a young family was that I left school at 14 and went into full-time employment. This meant that my only formal education was up the 6th Class Primary Certificate level. However, in 1983 I got the opportunity of returning to full-time Education to study for and take the Leaving Certificate Exam in 1985. I had the unique pleasure of sitting my Leaving Certificate in the same year and school as my eldest daughter, who was sitting her Intermediate Certificate at the same time.
As a soldier, fitness was very important to me from the age of 17 when I joined the Army as it was when I was leaving at the age of 47, and still is to this day. My daily walk amounts to an average 11,000 steps daily.
I was diagnosed with COPD in February 2022 accompanied by other medical problems. I was referred to HSE Naas Respiratory Care Services and in April 2023 I commenced an eight week Pulmonary
Rehabilitation Course in the HSE Primary Care Facility on Station Road Newbridge.
During my search for treatment from late 2020 up to this period I encountered many problems ranging from “No Diagnosis” to “Misdiagnosis”. This of course was because the world was dealing with a new and
frightening disease known to us now as Covid 19 and I, unfortunately was at the receiving end of “Long Covid”.
So, in 2024 I received a call from Mary Rose Cunningham inviting me to join a new pilot scheme being run by HSE called “Health Literacy”. This was to give us, the patients the ability to deal, firstly with our own medical conditions and, secondly to be capable of discussing with and asking questions of those Healthcare Professionals who are looking after us.
It was during this Health Literacy Course that I had an appointment at a hospital OPD for a routine check- up. It became apparent that a course of medication undertaken on a previous visit was NOT being terminated as promised. Here was the opportunity to put my newfound skills into practice. I reminded him of the previous consultation and he spoke to his boss and yes, they both admitted that the promise was made and the medication in question was terminated with immediate effect. I left the hospital that morning feeling rightly pleased with myself. Had I not spoken up, I would still be taking a completely unnecessary medication. It is very important for us as patients to be aware of the treatment & medication being provided and prescribed for us, and be prepared to question our Healthcare Professionals while in consultation with them. We won’t get the answers anywhere else. Remember, none of us are infallible.
Mary Rose Cunningham
Mary Rose is a Self-Management Support Coordinator for people living with long-term health conditions who is a former Public Health Nurse and Intensive Care Nurse
and holds a BSc in Health Science and has extensive clinical experience caring for critically ill patients, providing insight into the importance of primary and secondary prevention.
Mary Rose is also experienced in leading projects advocating for services and supports that empower people to manage their own health
Mary Rose has a strong interest in Health Literacy; believes tailored health literacy programs should be available to all service users to improve compliance and outcomes and is an advocate for patient-centred care, emphasising the importance of including the
patient’s voice at the core of healthcare decisions
Mairead Holland
Patient and Service User Engagement Officer in Dublin and Midlands Health Region.
This involves empowering patients and service users to be more actively involved in decisions about their own healthcare and also in the design, delivery and evaluation of health services.
I believe health literacy is an important element in ensuring that patients and service users can become active partners in their own care and can communication confidently with healthcare providers. This ultimately leads to a more person-centred and responsive health service.
Dr Cathy Breen
Cathy is a CORU registered Clinical Specialist Dietitian in Obesity and Diabetes, with a PhD in Nutrition, based in St Columcille’s Hospital in Loughlinstown, Dublin since 2003. She is a certified DAFNE Educator, Knuston Ireland and Behaviour Change Training facilitator, insulin pump trainer, and has co-authored a number of clinical guidelines that aim to improve and standardise high quality non-stigmatising diabetes and obesity care nationally and internationally, including the DUK Evidence Based Guidelines for the Prevention and Management of Diabetes, the Irish National
Clinical Guideline for Type 1 diabetes, and Clinical Practice Guidelines for the Management of
Obesity in Ireland. She is currently Chair of the Association for the Study of Obesity on the island of
Ireland. She was seconded to the National Clinical Programme for Diabetes as Interim Dietetic Lead
and sits on the Diabetes Language Matters working group.
Michelle Lowry
Michelle is living with type 1 diabetes (T1DM) for over 14 years now. She was diagnosed as a young
adult in the final year of her undergraduate studies in Occupational Therapy. Both Michelle’s personal experience and professional background contribute to her passion for advocating for individuals with various chronic health conditions. Michelle currently works as a Senior Occupational Therapist-Researcher in Trinity College Dublin. Michelle’s areas of interest include psychosocial support for chronic health conditions, person-centred care, and equity of healthcare access.
Michelle graduated with a MSc in Diabetes in 2022. Alongside her own lived experience of type 1
diabetes, Michelle has also had various professional roles in the area of diabetes including her role
as Support Worker working directly with young adults with T1DM for the pilot D1 Now study, her continued involvement with the D1 Now research team as a member of the trial management group, her contribution to various academic papers and conference presentations, as well as her
current role with the Diabetes Language Matters working group.
Nadia Lacatus
Padraig Ryan
Suzanne Nolan
Suzanne Nolan is the Regional Roma Health Lead with HSE Social Inclusion for the South East and has been in this role for 11 years. The main purpose of this post is to improve the health outcomes of Roma community members across the South East using a partnership approach. Suzanne has covered other roles in the HSE including acting as the Regional Intercultural Health Lead (co-ordinating health supports to Programme Refugees and People Seeking International Protection in the South East) and acting as the Regional Traveller Health Co-Ordinator.
Suzanne has supported the HSE Social Inclusion Team in the South to develop an equality and human rights approach to work which has regard to the need to eliminate discrimination against, promote equality of opportunity for, and protect the human rights of our service users and staff. This approach is underpinned by the values of dignity, compassion, participation, inclusion, and social justice. Before joining the HSE Suzanne worked in the community and voluntary sector for nearly 20 years in the areas of community development, family support, adult & community education, research and youth work.
Christine Fenton
HSE National Patient and Service User Forum Member
Katie Ellwood
Katie Ellwood is a Project Manager within the HSE, managing projects under the National Clinical Director for Integrated Care. She holds an MSc in Health Economics and Management from Erasmus University Rotterdam, with a particular focus on improving
clinical practice with patient safety and quality management at the forefront.
Prior to joining the HSE, Katie worked with the Norwegian Directorate of Health on a range
of EU-funded health programmes, gaining valuable experience in international collaboration, cross-border healthcare, and policy development. She is currently involved in Ireland’s participation in the EU4Health Joint Action on cardiovascular disease (JACARDI),
supporting the implementation of innovative screening and risk stratification initiatives for those most at risk of cardiovascular disease.
In parallel, Katie is contributing to the development of the national clinical guideline for Myalgic Encephalomyelitis (ME), supporting evidence-based improvements in the recognition and diagnosis of this complex condition. Her work is driven by a commitment to delivering integrated, person-centred care, grounded in data and collaborative policy
approaches.
Elaine Dobell
Elaine Dobell trained as a Physiotherapist receiving her BSc from the University of East London, UK. She then worked as a chartered clinical physiotherapist at several hospitals in London and moved into a physiotherapy management role in 2000. In 2007, Elaine was awarded a Masters Degree in Health Management from The City University, London and
later that year Elaine and her family moved to the Republic of Ireland to take up a Physiotherapy Manager-in-Charge post at Galway University Hospitals. Elaine then went on to complete a MSc Health Informatics from University of Limerick in 2015.
Elaine then moved to work with the Saolta Group Executive in various roles including Clinical
Projects and Service Improvement. In 2019, Elaine worked as part of a clinical triumvirate to establish the new Saolta Women’s and Children’s Clinical Network. All of these roles focussed on quality and patient safety, service improvement and redesign, project
management and patient and service user partnership.
For the last two years, Elaine has worked with the National Clinical Director for Integrated Care in leading National Clinical Programmes and providing clinical advice to the HSE, Department of Health and the public.
Elaine has also had opportunities to lecture on undergraduate and postgraduate programmes on health services governance and structures and is currently lecturing on a Level 9 Healthcare Analytics Programme in ATU.
Adéle de Vries
Adèle is a Project Manager in the Clinical Design and Innovation team at the Office of the Chief Clinical Officer, HSE. She leads initiatives such as the Your
Voice Matters National Patient Engagement Platform, which empowers patients and families to shape healthcare improvements. Under her leadership, Your Voice Matters surveys have helped inform national policy direction while also driving enhancements in local healthcare services. With a background in pharmacy and over a decade of patient-facing experience, Adèle combines clinical insight with
design thinking to deliver meaningful, patient-centred innovations. She is passionate about ensuring that patient voices are not only heard but translated into tangible improvements in healthcare.
Dr. Edel Tierney
Dr Edel Tierney currently serves as a National Research Officer at Tusla — the Child and Family Agency. Before taking on her current role, Dr Tierney held a post-doctoral research position at the
UNESCO Child & Family Research Centre (UCFRC) at NUI Galway. There, she contributed
to a key initiative—the Children’s Participation work package—which formed part of Tusla’s Development and Mainstreaming Programme for Prevention, Partnership and Family Support (PPFS). Her research examined how participation by children and young people could be effectively embedded within Tusla’s service delivery, with particular attention to
vulnerable and marginalized groups and participatory research methods.
Her broader research interests span:
-
Children and young people’s participation in decision-making, particularly within child welfare and protection services;
-
Implementation science—how research findings can meaningfully inform practice and national policy;
-
Patient and Public Involvement (PPI) in research, especially in engaging socially excluded communities
-
Community participation in primary care and stakeholder involvement in research, design and delivery.
Dr Tierney is a co-author of several influential reports and journal articles.
Her work has contributed to impactful, child-centred research that has garnered recognition at national and European levels. Notably, a collaborative study involving Tusla and Trinity College Dublin. Titled “Through the Eyes of the Child: A Study of Tusla Child Protection &
Welfare Intervention”, received the 2023 European Social Services Award. The study was commended for authentically amplifying the voices of children involved in the child protection system and promoting change in practice and policy informed directly by children’s experiences.
With a robust foundation in participatory research, implementation science, and public involvement, she plays a crucial role in guiding research strategy at Tusla to ensure that the insights and lived experiences of children and young people are meaningfully integrated into service planning and policy.
Edel Murphy
Edel Murphy is the national Programme Manager for the PPI Ignite Network in Ireland. Edel has worked in public and patient involvement (PPI) in research for a number of years, working with researchers across all disciplines and with the public to build PPI capacity
among both constituencies, delivering education and training and providing support to help researchers understand how to plan for and embed the public and patient voice across their research.
In her current role, Edel is driving the development and growth of an energetic, collaborative and innovative Network, which brings together a diverse range of stakeholders nationally and internationally to build a shared voice for PPI in research in Ireland. Edel
facilitates knowledge exchange and sharing of skills and expertise across all involved in the Network. She excels in designing and delivering innovative and thought-provoking training workshops. Centrally located in the Network’s national office, Edel connects people and organisations and conducts wide ranging engagements and two-way dialog with numerous
and diverse partner organisations.
Ashleigh Kienan
I am 22 years old and I have been a part of YAC for a decade. Some of the projects I have been involved in over the years with CHI include working with the architects on the design of the hospital, inputting into the art work, facilities and facilities needed in the rooms in the new hospital, new policies, teaching staff about good communication and the patient voice and working with the HSE on transition from Paediatric to adult services.
Grace McKenna
I'm 22 years old and I've been a part of YAC for 10 years since 2015. I've been a part of multiple different projects such as the design of the artwork for the new children's hospital, the re-promotion of engagement in sports for young people with health conditions and our Youth Advisory Council recruitment videos.
Claudine Frame
My name is Claudine Frame, and I am the partnering with Patients Coordinator in Children’s Health Ireland. The main aspect of my job is in patient/family/parent engagement and involvement in CHI service and project design. As part of this role, I coordinate the CHI
Youth Advisory Council (YAC) which is a group of young people aged between 12 and 21 years of age who are all patients or former patients of CHI. In addition, to this I am also a coordinator of the FCHI Family Advisory network, which consists of CHI parents, support
groups and advocacy groups. Between these 2 groups, CHI is building its foundations for patient engagement and the co-designing of services, policies and representation of committees.
Naomi Bartley
Naomi Bartley is a Registered Children’s Nurse, Registered General Nurse and Registered Nurse
Tutor at the Centre of Children’s Nurse Education, based at Children’s Health Ireland. With a strong
clinical background in children’s nursing and a passion for education, she currently leads a national
initiative that supports the continuous professional development of nurses that care for children with complex healthcare needs in the community.
Her work involves the design and delivery of continuing education programmes that support high- quality, child and family-centred care. Naomi is a strong advocate for advancing children’s nursing education through meaningful collaboration and partnerships with families and healthcare professionals. Recognising parents as experts in their child’s care, she is committed to co-designing education with families. She aims to support nurse education that is evidence-based, holistic and
informed by the lived experiences of children and their families.
Mark Bolger
Mark is a family carer to three people living with CIPO, the ACTG2 gene mutation and MMIHS. Over the last 8 years, they have battled with and survived sepsis, adult TPN dependency and caring for his daughter who is currently long term TPN dependent. He has great experience in advocating for patient rights for his own family and especially his daughter who has undergone multiple surgeries both here and in the UK.
He is a big believer in patient advocacy and peer support in the community, that communication and understanding is key from both patients and medical professionals to enhance our care services and support for our children's medical journeys.
Mark is the co-founder of Chronic Health Advocate clg, a not-for-profit organisation that provides accessible, innovative supports for individuals and families living with complex, life-altering and chronic illness. Mark set up this organisation alongside his wife, to develop new care supports for families that were not currently available for dealing with the non medical burdens of living with illness within the family.
Mark has worked on a number of committees as a patient partner contributor. He is currently a member of the Research Ethics Committee within Children's Health Ireland (CHI), a patient partner forum committee member at University Hospital Waterford and has contributed to the development of the new program developed within CHI: "Caring for Children with Complex Needs""
Anne Lawlor
Anne Lawlor is a board member of Rare Diseases Ireland and she is the current chairperson of the HSE Patient Forum.
Anne's daughter Áine, at age 15, was diagnosed in 1998 with 22q11.2 deletion syndrome. In 2007 Anne co-founded the 22q11 Ireland Support Group and since then she has worked in a voluntary capacity with families, academics and various healthcare professionals both at home and abroad.
In recognition of her advocacy efforts Anne won a 2017 Global Genes Champion of Hope Award and she was the 2022 recipient of the 22q international 'Unsung Hero Award'.
Anne's long-held vision for care-coordination for 22q was realised when Wesley Mulcahy was appointed as Complex Care Coordinator at the OLCHC 22q Pediatric Clinic in November 2021. 22q Ireland work in partnership with the clinic and together with CHI they won a 2023 HSE Health Service Excellence Award for their project, Complex Care Coordination: A Transferable Model of Care for Rare Diseases. The team won the award for demonstrating that parental liaison and putting young people at the centre of their healthcare decisions is having positive outcomes for people living with rare disease.
Anne's passionate interest in patient partnership and its benefits comes from her now 40 years experience of her life with her daughter whose complex care needs have continued into adulthood. She believes that transformative change for our health service is possible and can be achieved by working together with shared values and a shared vision.
Iolo Eilian
Assistant National Director for Patient and Service User Experience, HSE