Launch of First National Model of Care for People with Cystic Fibrosis

Press Release: Monday, 30th September 2019

There are 1,377 people with Cystic Fibrosis (CF) in Ireland

 It is estimated by 2025, the population with CF will have increased to approximately 1,900

 As  life expectancy improves, complexity of CF care increases progressively

 

Today, Monday 30 September 2019, the Minister for Health Simon Harris TD attended the launch of the first Model of Care for People with Cystic Fibrosis.

The Model of Care has been developed by the HSE National Clinical Programme for Cystic Fibrosis (NCPCF) and it outlines how the care of People with Cystic Fibrosis should be organised and resourced now and in the future.  One of the key recommendations of the Model is that People with Cystic Fibrosis must be cared for in a small number of Designated Cystic Fibrosis Centres that are properly staffed and resourced. People with Cystic Fibrosis must receive their CF care from, and have regular follow-up, by a Designated Cystic Fibrosis Centre.

New Model of Care - Specialist CF Centres will;

  • Have a specialist multidisciplinary team of trained experienced CF Specialist Medical, Nursing, Health and Social Care Professional and Administrative Staff
  • Have dedicated single inpatient rooms, and day care rooms with ensuite facilities and outpatient rooms for assessment/treatment of People With CF (PWCF)
  • Have strict infection control facilities and protocols in place for inpatient, outpatient and day care to prevent cross infection from other PWCF and from other patients
  • Have Consultants with a special interest in CF in the following specialties: Endocrinology, Gastroenterology, Hepatology, Nephrology, Oto-Rhino-Laryngology (ENT), Palliative Care, Psychiatry, Radiology including Interventional Radiology, and Thoracic Surgery
  • Be designated as a ‘Specialist CF Centre’ by the National Clinical Programme for Cystic Fibrosis (NCPCF)

According to data provided by the Cystic Fibrosis Registry of Ireland there are 1,377 people with CF in Ireland. It is estimated that by 2025, the Irish CF population will have increased by 63% on the 2010 population (approximately a 75% increase in adults and 25% in children with CF).  

Speaking at the launch, Professor Charles Gallagher, HSE National Clinical Lead for Cystic Fibrosis said:

“This Model of Care is dedicated to people with Cystic Fibrosis, and their families, who bravely deal with Cystic Fibrosis every day of their lives. It is also dedicated to the people with Cystic Fibrosis who are no longer with us and their families; they must not be forgotten.

Today we unveil this first Model of Care for People With Cystic Fibrosis which  was written by the National Clinical Programme for Cystic Fibrosis and which  includes nominees from different groups involved in the health of People with Cystic Fibrosis. It includes nominees from the Cystic Fibrosis Centres and Shared Care Centres throughout Ireland, Cystic Fibrosis Team Members, Cystic Fibrosis Ireland, Cystic Fibrosis Registry of Ireland, HSE Acute Hospitals Division and others.

This first Model of Care for CF in Ireland is the roadmap for CF care now and in the future. It will ensure that CF care and service improvements are evidence-based and cost-effective.

“Internationally, Ireland has the highest prevalence of CF and a greater incidence of more severe mutations than most countries. Therefore Ireland has the largest, most complex population of people with CF in the world. For each person with the condition, the complexity and severity of CF and the burden of care usually increase as they grow older.

“This increasing complexity and severity with age will not change with current disease-modifying treatments for CF because these drugs are not disease-curing. Healthcare needs will continue to increase which will require on-going patient-focused, evidence-based, cost-effective planning, involving all stakeholders, to ensure the highest quality of care is provided to people with CF.

“The significant improvements in health and survival in CF internationally in recent years are due to the development and resourcing of designated Specialist CF Centres, aggressive treatment of respiratory and other manifestations of CF, the collection and organisation of data into registries, the development of accreditation/peer review and clinical standards, and the involvement of the whole CF community in research.”

Minister for Health Simon Harris TD, speaking at launch today, stated:

"This is truly a national model for People with Cystic Fibrosis throughout Ireland.  The Model is focussed not only on today, but on the future. At the centre of this model of care is the health and wellbeing of people with cystic fibrosis and this must continue to be our priority.

"As Minister, I want to assure you I will do everything I can to limit the impact of this disease, enhance the quality of patients’ lives and support scientific endeavours in the search for a cure."

The NCPCF strongly recommends that a National Cystic Fibrosis Office be established to coordinate, manage and integrate all aspects of CF care in order to optimize the health and quality of life of PWCF in Ireland. This is one of the key recommendations of the Model of Care and CF community.

For more information on the new Model of Care please visit www.rcpi.ie/news/releases/model-of-care-for-cystic-fibrosis-in-ireland-launched-at-rcpi/ or www.hse.ie

Last updated on: 30 / 09 / 2019