Although access and treatment have improved, staffing levels remain a huge issue, says Sam Byrne.
I have a daughter in college (Tara, 21) and a son in secondary school (Caelan, 15). They don’t get up until I have left for work, so I have the house to myself.
I check overnight emails, then touch base with CF nurses and social workers in various hospitals to ask if they would like to refer any members for support. I process grants for members (exercise, transplant, counselling, social, and distress) and match counsellors with members.
I talk by phone with our two CF advocates. They work with members to address questions about CF, identify information gaps, and monitor social media.
I am working on our ‘1 in 1,000 campaign’, which launched this month. We want to recruit 1,000 women to take part in the VHI Women’s mini-marathon in June on behalf of the charity.
This morning we have a meeting of the project committee to discuss our social media strategy.
I meet the Independent Living Working Group, made up of parents, CFI staff, people with cystic fibrosis, and advocates, to follow up on our recent survey of members and to assign roles to group members working on areas such as employment, housing, fertility.
Over half of all people with cystic fibrosis are now adults, so their needs are changing.
Our office is based in Portobello, a lovely area to enjoy lunch in good weather.
I meet the CEO and senior management of Our Lady’s Hospital in Crumlin.
These meetings are also attended by parents of children with CF and our CEO, Philip Watt.
Although access and treatment have improved, staffing levels remain a huge issue.
In recent years, CFI has invested €9m in new and expanded CF centres.
I work on Spectrum, our quarterly magazine and on the design of the brochure for our upcoming annual conference.
4pm to 5pm
I work for a member applying for a medical card and another applying to get onto the medical priority housing list.
At home, I have podcasts to listen to and books to read, as I am studying for a degree in counselling and psychotherapy.
I have two dogs, Portia and Milo, who enjoy long walks.
* Sam Byrne is member services manager, Cystic Fibrosis Ireland
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