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ILFA Patient Information day, Belfast, 5th April 2014

The ILFA Patient Information Day took place on Saturday 5th April in Belfast. Terence Moran, ILFA Chairman welcomed everybody to the event.
Joe Brolly, GAA pundit and organ donation champion was the first speaker. A few years ago, Joe donated a kidney to his friend, Shane Finnegan. Unfortunately the donated kidney was rejected but Joe’s experience opened up a new world to him and he now campaigns for organ donation. Joe highlighted how only 15 patients in Northern Ireland have been prescribed Pirfenidone, the only drug available to slow down the progression of Idiopathic Pulmonary Fibrosis (IPF). This remarkably low number of patients who have access to drug treatment represents only 10% of the 150 people in Northern Ireland who currently meet the strict criteria to be prescribed the medication.

Joe also highlighted how lung transplantation is the only effective treatment for patients with IPF. Joe addressed the blanket ban on transplantation in Great Britain for patients aged over 65 years of age. This practice is discriminatory and patients should not be automatically refused transplant assessment because of their age. Joe spoke passionately about organ donation and explained how the family are at the heart of the decision to donate the organs of their next of kin if the circumstances arise. Last year in the UK 150 families refused consent for organ donation to proceed even if their family member had signed an organ donor card. The proposed opt-out system for organ donation in Ireland will allow people to specify that they do not want to donate their organs in the unforeseen case of brain or cardiac death. This system will work better than the system currently in place where people must carry an organ donor card. Figures for 2013 for the UK revealed that a staggering 68% of organ donors were not on the organ donor register. Joe urged everybody in the audience to “have the conversation” with their families regarding organ donation so that everybody’s wishes are known to the family.

Dr Joe Kidney, Respiratory Physician, from the Mater Hospital in Belfast gave a very informative presentation on IPF. He described how IPF occurs in people aged over 50 years of age and that symptoms usually have a gradual onset. Dr Kidney described the onset of breathlessness as “top of the stairs” breathlessness. Cough is another common symptom and does not improve with antibiotics. “Velcro crackles” (the sound made when Velcro strips are torn apart) is often heard by Doctors when they use a stethoscope to listen to an IPF patient’s chest. Fibrosis (scarring) is the term used to describe the thickening of alveoli cells in the lungs because the natural process of repair goes wrong. Alveoli are specialised cells that allow the oxygen transfer from the lungs into the blood stream. When the lung tissue thickens, the normal transfer of oxygen is prevented and results in low blood oxygen (oxygen saturation).

Dr Kidney described how Northern Ireland has the highest prevalence of IPF in the UK. He told the audience that 180 cases of IPF attended the Mater Hospital in Belfast over a 5-year period. Possible reasons for this exceptionally high number of patients in such a small geographical area include the high concentration of industry in the province, for example, linen mills, ship building and power-stations. It is very important for doctors to take a full and detailed employment history for every patient from leaving school through to retirement to try to identify any periods of sustained and prolonged exposures to industrial dusts/chemicals that may have triggered IPF.

David Moore, a Specialist Respiratory Nurse at the Mater Hospital in Belfast spoke about pulmonary rehabilitation for IPF patients. David asked the audience about their experiences of breathlessness and how this impacted on their emotions. Patients reported that they became breathless when standing up, moving about and doing regular daily activities. They often felt frustrated, frightened and sometimes angry at no longer being able to do everyday activities. Pulmonary rehabilitation is a structured exercise programme that is tailored to each patient’s needs and involves exercise, education and psychological support. Pulmonary rehabilitation aims to: Increase your physical activity (functional performance), improve symptoms, improve quality of life, and increase patients’ independence and reduce healthcare utilisation.

Pulmonary rehabilitation programmes usually consist of 6 weeks of prescribed exercises ranging from physical training, strength and respiratory muscle training. Education sessions and psychological support are essential as they allow patients to manage their condition better using motivation, relaxation techniques and nutrition to maximise wellbeing. After completing a pulmonary rehabilitation programme, patients are able to walk further, carry out activities of daily living with less breathlessness and reduced tiredness. People who have a positive attitude and want to help themselves fare best and get the most of pulmonary rehabilitation programmes. David also highlighted the fun and social benefits of taking part in pulmonary rehabilitation classes.

Noreen Baxter, a Respiratory Nurse Specialist with the Mater Infirmary, Belfast, spoke about Home Oxygen Services in Northern Ireland. She began by outlining the circumstances in which oxygen should be prescribed. The good practice guidelines state that home oxygen therapy should not be prescribed for patients with breathlessness in the absence of reduced oxygen levels (also called “oxygen saturation”) less than 92%. The vision of the Home Oxygen Service is to be accessible, safe, effective and responsive to patients and to provide clinically led, evidence-based, value for money care. When a patient is referred to the Home Oxygen Services in Northern Ireland, a number of steps are undertaken. First, the patient is assessed to make sure home Oxygen will be useful and effective. Later, patients are reviewed to make sure the service is meeting their needs and to put in different supports where and when necessary. Noreen also discussed the various types of home oxygen equipment on offer to meet different patient requirements. Noreen provided information on how and when oxygen is prescribed and the importance of monitoring its effectiveness and use by the patient, which are outlined in an upcoming guidance document from the British Thoracic Society.

Robert Early spoke about his family’s positive experience of organ donation. 20 years ago, Robert’s family decided to donate his father’s organs for transplantation when their family was struck by tragedy. The generosity of the Early family gave the precious gift of new life to 5 organ recipients. Over the years, Robert’s family received letters of thanks from the organ recipients and it brought home to his mother and his siblings just how significant their decision was. Everybody in the audience was touched by Robert’s heartfelt story and how he was incredibly proud of his father’s legacy.

Professor Jim Egan from the Mater Misericordiae Hospital in Dublin selected 3 people in the audience for a special mention as he addressed 3 main themes, organ donation, transplantation and access to IPF medication. Prof Egan acknowledged the tremendous generosity of Robert Early’s family for donating their father’s organs for transplantation in tragic circumstances. Every year there are approximately 3,500 deaths in intensive care units in Irish hospitals but only 80 of these cases become organ donors. More organs are desperately needed to help the hundreds of patients on the transplant waiting list. Next Professor Egan described John’s story. John had a lung transplant 6 years ago aged 67. John is in good health and is a great advocate for the success of lung transplantation. In some parts of the UK, patients are not being considered for transplantation because of their age. Patients and doctors need to challenge this ageist approach which actively discriminates against patients over 65 years of age, irrespective of their general health and suitability. Professor Egan also spoke about Seamus, one of only a handful of patients in Northern Ireland who is on Pirfenidone treatment. Northern Ireland has been largely forgotten about and there is an inequity for access to treatment for IPF patients. Prof Egan urged patients and their families to write to their local representatives and MLAs to campaign for fair treatment and access to Pirfenidone, the only drug available to slow the progression of IPF.

The meeting ended with an interactive Questions and Answers session. Topics discussed included oxygen use, travelling, the criteria for being prescribed Pirfenidone, medication side effects and access to pulmonary rehabilitation.

Terence Moran, ILFA Chairman, concluded the meeting by thanking the audience for attending, the British Lung Foundation and BOC Healthcare for hosting information stands, Boehringer Ingelheim for supporting the day and the speakers for their excellent presentations. Terence asked people in the audience to fill in the ILFA Patient and Caregiver Surveys and also highlighted the need for fundraising and regular donations via standing orders to allow ILFA to carry on our work.

Special thanks to Matt and Teresa Cullen from Dublin who helped launch ILFA’s new information leaflets entitled “Getting the most out of your hospital visit; Advice for IPF patients” and “Advice for carers of people with IPF”.

The ILFA Patient Information Day was kindly supported by Boehringer Ingelheim.