Advocacy News Feed

CFI Submission on Water Charges

CFI recently (August 2014) made a submission to the Commission on Energy Regulation on the Economic Regulation of the Public Water Service Sector. The purpose of the submission was to highlight the additional strain which will be placed on people with Cystic Fibrosis (PWCF) and the households in which they reside when the impending water charges are introduced next year.

This submission is based on the concerns of our members, highlighting the additional water needs of this patient population and also the need to ensure the provision and affordability of basic services to the most vulnerable populations in society.

Summary of key points in the submission

  • Water is a basic human right and therefore mechanisms ensuring affordability and access for Ireland's vulnerable households, including those with a medical condition, must be established and implemented before charges are introduced. This can be achieved through the allocation of free water allowances and medical allowances.
  • A large proportion of PWCF are now managing their illness in their home. This requires a rigorous daily routine of treatments, such as taking numerous nebulisers, airway clearance (including exercise) and often over 30 tablets per day. The need for water for equipment cleaning, adopting correct hygiene procedures, personal hygiene after exercise and large volumes of drinking water are essential to the management of this illness.
  • The majority of PWCF are pancreatic insufficient, which is generally managed through pancreatic enzyme replacement therapy. However, this complication often causes an increased volume of protein and fat in the bowls, resulting in diarrheal symptoms and increased use of the toilet.
  • Cystic fibrosis can cause a person to become easily dehydrated or to have very low salt levels. This makes it very important for people with cystic fibrosis to drink high volumes of water on a daily basis.
  • Households with a medical condition, such as Cystic Fibrosis, are identifiable through medically assessed payments, such as the Long-Term Illness scheme & the medical card scheme or through social supports, such as domiciliary care allowance, carers allowance, disability allowances, etc

To read the full submission, please go to www.cfireland.ie

Update 29th Sept 2014
Charges will be capped at the assessed rate for people whose medical condition requires extra water usage. Customers can request this facility from Irish Water but a list of specific medical conditions has not been drafted.

Read more about the process involved here:
www.cer.ie/docs/000979/CER14756%20Water%20Charges%20and%20Medical%20Conditions%20requiring%20Higher%20Water%20Usage.pdf

We will keep members updated with any further developments on the issue.

Advocating for Medical Card Eligibility for People with CF

HSE-medical-card

The Government has decided to develop a policy framework for medical card eligibility to take account of medical conditions. An Expert Panel has been established to examine the range of medical conditions that should be considered for inclusion in the policy framework. The Expert Panel will identify a range of medical conditions, in priority order, that would benefit most from medical card eligibility. Contributions were sought from the public, patient representative groups and professional bodies, to inform the work of the Expert Panel. In addition to encouraging members to provide feedback on this process, CFI also made a submission to the HSE advocating for people with Cystic Fibrosis to be automatically and permanently granted a medical card. The full submission is available on our website at: www.cfireland.ie/pdf/CFIMedicalCard_Submission_2014.pdf


In response to this submission, CFI were invited to send representatives to a key stakeholder meeting on July 24th to convey the challenges faced by people with CF interacting with the medical card application and review process. This provide us with an opportunity to highlight the strengths and weaknesses of the current system and to inform the working group on the necessity for PWCF to be recognised for inclusion in this scheme based on medical need. The Expert Panel has been asked to report to the Director General of the Health Service by September Ñ we will ensure members are kept updated on all subsequent developments relating to the medical card.