Patient Focus: Interview with Lovexair
To mark World COPD Day, we spoke to Shane Fitch from Lovexair; a Spanish organisation which supports people with long-term lung conditions. We asked Shane about their plans for the day and the key challenges they are facing this year.
Can you tell us a bit about Lovexair?
Lovexair was established in Spain to respond to the collective needs of the community of people affected by the burden of chronic respiratory disease and Alpha-1 Anti-trypsin deficiency. The Foundation aims to strengthen and support existing patient association networks and offer key services to patients and care- givers to better manage their chronic condition by developing a patient-coach network to support them which is managed by ICT applications. In this way we can fulfill a necessary role to complement healthcare services struggling under budget constraints to improve care for patients,support carers and help the healthcare professionals, who are unable to cope with the large number of people affected by respiratory disease and disorders.
We are also working on new areas of support to business on the importance of Lung Healthcare in the workplace and hope to build relationships with industry where prevention and adopting healthier approach to life-style are an integral part of our routine.
How did you become involved in the organisation?
I previously led the Alfa-1 Spain, patients' association for 12 years ,as my son was born with AAT Deficiency in 1998 and had collaborated at European and International level with many organizations for rare and chronic disease. The main area of support which came to my attention to help the community, was improved self-management in respiratory disease and I felt that I could design a low-cost model that could begin to provide this service on a wider scale , availableto a greater number of people affected by respiratory disease, whilst creating employment in this sector .
What are your big milestones this year?
We are involved in the EIP AHA working group for Integrated care which is shaping and supporting best practices and new models for chronic disease management in healthcare systems across Europe. We hope to go into pilot stage, by training a group of educators "patient coaches" and implementing the EducaxAir program with the cooperation of some public healthcare authorities who are interested in evaluating our model. We also aim to engage with businesses and introduce the" Yo Respiro" program to improve Lung Health care and healthy lifestyle, in the workplace.
How will you be marking World COPD Day?
We are holding a Spirometry event in Seville Metro and also are re-releasing the Spanish Documentary "Voices to the Air "through Vimeo, which deals with the reality of living with lung disease and was filmed in Madrid, Barcelona and Cádiz with patient, care-giver and healthcare professional participation.
What are the key challenges you’re facing this year?
Financing is the main difficulty in Southern Europe. We aim to be a socially responsible and self-financing Foundation so that we improve our sustainability and can develop and provide our services across countries to healthcare authorities and services, individual therapists and clinicians who have a large number of patients with respiratory disease and are looking for economical solutions to better support their patients. The healthcare services are beginning to see that they have to re-engineer their systems to adapt to chronic disease and rare disease management. We can help in that process and we need to work together on how best to achieve this
What changes would you most like to see in the future?
The strength of patient associations lies in uniting on issues to campaign and lobby for better conditions. Oxygentherapy access and better quality services to aid mobility for these patients is an area which will require a lot of work in order to bring about the changes nationally . Together we need to organize a task force or working group to take on this challenge. Then there is the issue of disability for people with respiratory disease which remains very far behind achieving disability status and conditions, caused by other physical and health problems and we are not on an equal footing with these problems, yet.
What are you most proud of in your organisation?
The people who have contributed their time and effort to the early growth of Lovexair Foundation and its projects, from before we were even officially established. I am very grateful for all their efforts and support. It wouldn't be possible to grow without their involvement and their concern and tenaciousness, to improve the quality of life for people affected by respiratory disease.