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Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

ILFA Pre-budget submission

 

Pre-budget submission by the Irish Lung Fibrosis Association

Background

The Irish Lung Fibrosis Association (ILFA) is the national charity supporting patients and families affected by idiopathic pulmonary fibrosis (IPF). ILFA was established in 2002 and relies on donations and the fundraising activities of supporters to carry out its work. ILFA does not receive any state funding.

IPF is a rare, chronic, progressive, debilitating and terminal lung disease that causes irreversible scarring of the lungs, low oxygen levels and ultimately respiratory failure. Patient's symptoms include severe shortness of breath, debilitating cough, extreme fatigue, and muscle weakness.

It is estimated that approximately 360 people are diagnosed with IPF every year and approximately 1000 people in Ireland are currently living with the condition.

Key facts about IPF

  • IPF is usually diagnosed in people over the age of 50. It is more common in older adults and rare in younger people.
  • The median survival time from diagnosis is 2-3 years (worse than for many common cancers).
  • There is no cure for IPF. Drug treatments can help slow down disease progression in some patients and are used to control symptoms but the lung damage present at the time of diagnosis cannot be reversed.
  • A lung transplant is the only effective treatment option for IPF but this is not a suitable option for everyone.
  • Oxygen is often prescribed to help patients manage their breathlessness . Oxygen needs will increase as the disease progresses.
  • IPF affects the daily lives of patients and careers and impacts on their physical and emotional wellbeing, social activities and finances, and quality of life is reduced.
  • As people live longer, it is expected that more people will be diagnosed with IPF.

ILFA is aware of the lived experiences and unmet needs of patients, carers and family members affected by IPF following information gathered from regional focus group meetings, discussions at monthly support group meetings, personal stories and results from a survey of patients and carers on the burden of IPF that was conducted in 2014.

ILFA would like to ask government representatives to consider our pre-budget submission to support (i) vulnerable patients across the country and (ii) the healthcare professionals in primary care, secondary care and specialist centres caring for patients and families affected by IPF.

ILFA is calling for improvements to:

  • Medical card: Fair and timely medical card approval procedures for patients diagnosed with IPF. This devastating and progressive disease places a huge financial burden on patients and families and their medical care needs will increase significantly as the disease progresses. Patients describe a difficult and gruelling process and numerous appeals when applying for a medical card. This process needs to be simplified to help patients access primary and secondary care and treatments in a timely and cost effective manner to help patients who need urgent support.
  • Illness benefit / Disability allowance / Invalidity pension: Fair and adequate social welfare paymentsfor patients diagnosed with IPF and other chronic conditions who have to leave employment when their illness prevents them from working.
  • Carers Allowance: Fair and adequatecarers allowanceto spouses and family members who undertake caring duties to look after IPF patients.
  • Warmer Homes Scheme: Expanded eligibility criteria and funding available for the Warmer Homes Scheme. IPF patients face increased home heating costs in order to stay warm as their blood oxygen levels fall. In addition, electricity energy bills are substantial for patients who depend on oxygen concentrators (oxygen machines) in order to correct the low oxygen levels in their blood. Patients reliant on 24 hour life-saving equipment should be offered a concession on their electricity bills, which are significant . Energy costs are a major cause of worry for patients and families.
  • Home help services: Increased funding to support home help services for IPF patients who experience difficulty with simple activities of daily living including getting dressed, bathing, and performing household tasks. The HSE and decision makers need to recognise the limitations experienced by patients living with a progressive, debilitating and terminal disease.

  • Oxygen provision: access to adequate oxygen supplies. Imagine being afraid to leave your house because you are expected to survive on just 6 cylinders of oxygen per month; this is the number of cylinders that administrators in some HSE areas decide a patient can have, even when the prescription from their doctor states a greater quantity. ILFA is aware of incidents where IPF patients have been refused their prescribed amount of oxygen cylinders and additional batteries for oxygen machines by HSE staff, as these requests were deemed "excessive" compared to other patients' oxygen requirements or "too costly" for the local community resources. Naturally ILFA is shocked and alarmed at these incidents where medical oxygen prescribed by a healthcare professional is refused by an administrator based on ignorance of this rare lung condition or on financial grounds.

    It is imperative that HSE administrators do not consider patients with more common and well known conditions, for example, Chronic Obstructive Pulmonary Disease (COPD), as the benchmark for the provision of oxygen services, as COPD is physiologically different to IPF and the oxygen needs of COPD patients are generally much less than those of IPF patients. No oxygen prescription should ever be refused.

    The scandalous rationing of life-saving oxygen needs to stop. Using portable oxygen cylinders, allows patients to attend hospital appointments, go shopping, and attend pulmonary rehabilitation (exercise) classes or support group meetings. Patients should not have to ration their oxygen supply or limit their participation in daily activities out of fear. 

  • Transplantation: Approximately 700 people in Ireland are currently awaiting life saving lung, heart, liver, kidney and pancreas transplants. ILFA and other members of the Irish Donor Network (Alpha One Foundation, Cystic Fibrosis Ireland, Cystinosis Ireland, and the Irish Heart and Lung Transplant Association) are in favour of a change to a soft opt out system of organ donation.

    Opt-out: Any deceased person is considered to be a potential organ donor unless they expressly refuse permission for their organs to be donated. Individuals who want to “opt out” have to sign up to a secure database and record their wishes. Family consent is at the heart of organ donation and next of kin consent must always be given before organ donation can take place and this model is called “soft opt out”. If next of kin consent is not given, then organ donation cannot proceed.}

    The introduction of a soft-opt out organ donation system to increase the number of potential organ donors and life saving transplant operations that can be carried out, needs to be prioritised. The introduction of a soft-opt out organ donation system was included in the last programme for government but was not delivered despite the recommendations from the Oireachtas Health Committee (2013) and cross party support.

    Ireland is the only EU country with no transplant legislation enacted. There is an urgent need to progress the excessively delayed Human Tissue Bill and prioritise and support organ donation and transplantation.

    Urgent funding should be directed to the National Heart and Lung Transplant Programme at the Mater Misericordiae University Hospital in Dublin. The Heart and Lung Transplant Ward is a 14-bed unit but due to severe staff shortages, only 7 beds are open. This is unacceptable and these bed closures are preventing severely ill patients being admitted to hospital for care and urgent pre-transplant assessments. Furthermore, the cardiothoracic transplant theatre in the Mater Hospital also requires dedicated funds to ensure that vital heart and lung transplant operations can proceed.

    Additional funding should be made available to the office for Organ Donation and Transplant Ireland to develop educational resources and run continuous public awareness campaigns to encourage organ donation.

  • Primary care, community care and palliative care: Increased health funding for resources to support patients accessing primary care, community care, palliative care services and acute hospitals. Patients who can access their primary care support network in a timely manner may be able to avoid stressful and costly hospital admissions. These measures would improve the lives of patients and families living with IPF and could lead to better health management, improved quality of life, fewer hospitalisations and better use of resources.
  • Pulmonary Rehabilitation: Additional funding should be provided to support the establishment of community and hospital pulmonary rehabilitation classes for patients with chronic lung disease. These classes involve exercise training, breathing techniques, education about life style choices and advice about quality of life for patients with chronic lung conditions. Pulmonary rehabilitation has been shown to help IPF patients improve their exercise tolerance and lung function.

 

The Irish Lung Fibrosis Association is very grateful for your consideration of our pre-budget submission.

For more information about IPF, visit www.ilfa.ie