Edelman is launching a new series spotlighting key individuals, from a selection of diverse patient groups, who operate within the evolving healthcare discussion in Ireland.
Name: Aishling Deegan
Title: Communications Manager
How long have you worked for the Irish Cancer Society?
I’m with the Irish Cancer Society nine years.
How did you get involved in the charity/advocacy sector – tell us about your career path to date?
Following my post-graduate I began working with Fleishman Hillard in Dublin across the public affairs and healthcare teams. After almost four years I decided to look at careers in the not-for-profit sector. I moved to the Royal College of Surgeons in Ireland, and from there to a farm lobby group on the public affairs and communications side. But my heart was always in health and when I saw the opportunity to work with the Irish Cancer Society, I jumped at it. It’s been an incredible nine years ever since.
What do you see as the Irish Cancer Society’s greatest achievement in the last three years?
There are so many achievements of note. The Irish Cancer Society is one of the key forces for the introduction of the smoking ban and plain pack cigarettes in Ireland; getting the new National Cancer Strategy over the line, with such a strong emphasis on the patient and cancer survivors; redressing the decline in HPV vaccination rates and being the key driver of the HPV Vaccination Alliance. All these initiatives will have a major impact on public health long into the future. I think it’s the quiet work, that happens each day across the country, that really is our greatest achievement. Each night our Night Nurses are in homes delivering care and support to people who are terminally ill. Every morning, our volunteer drivers pick up cancer patients and take them to their hospital treatment. Our cancer nurses are at the end of a phone or in our Daffodil Centres ready to talk to people who are worried about cancer, have cancer themselves or who love someone who has cancer. Our funded researchers are in labs working on new discoveries that could be the breakthrough against cancer. This is only a snapshot of the work that happens every day.
Patient organisations have traditionally provided a supporting role to patients and indeed their carers, but this role is constantly developing and evolving. What changes have you seen at the Irish Cancer Society in your time there and what has driven this change?
There have been many changes over my nine years at the Society. Over the lifetime of our most recent strategy we have changed the way we deliver some of our programmes. We have become much more focussed on individual and community-based programmes rather than mass market awareness campaigns. We are constantly innovating and developing new services that are designed for harder to reach communities. We are also doing more for cancer survivors. We are also seeing changes in the ways people access our information and are tailoring our information services to reflect this.
Increasingly in Ireland we see that advocacy, in representing collective members to seek recognition of a condition or to have a voice on decisions of care and policy, is at the heart of what a patient group does. How does the Irish Cancer Society navigate the challenges that this advocacy role brings? How has this evolution impacted the Irish Cancer Society?
The Society is in a relatively unique position in that we are almost entirely self-funded which allows us to have an independent voice and really challenge the government on behalf of cancer patients and their families. Patients are at the heart of our Advocacy work. Through our frontline services we are able to hear directly from patients about the issues that are truly important to them. This informs our work and ensures that we are having a real impact on behalf of patients.
How has social media changed the role patient groups play in their members lives?
I believe that social media has allowed a lot more people to access the Irish Cancer Society and our services. It also allows us to reach a more diverse group of people and a wider audience. It gives people the opportunity to connect with others who have similar circumstances to themselves. We generally enjoy great engagement on social media and currently have over 220,000 followers across our main social media platforms.
There is also an evolution in the role of patient groups in facilitating defined research and working with a range of corporate and academic partners to do so. What advantages does this bring to the Irish Cancer Society?
Our support for cancer research is Ireland is driven by the fact that cancer care for patients is enhanced by quality cancer research. As well as working with other organisations to design research collaboratively, the voice of the patient is also key. The value of having and including the patient voice when designing research or policy is being recognised more widely. By asking patients for their input and opinion, we can help ensure that researchers and policy makers are asking the right questions and addressing the correct needs.
The charity/advocacy sector revolves completely around trust. Due to malpractice in the past, this trust has eroded over the last number of years. What steps are charities taking to recover that trust?
Trust is a major issue for all organisations, but especially for charities who rely on public donations and fundraising to provide the services that they do. I do think trust rates are increasing across the board and this is down to the models of transparency that the majority of charities adopt. Having an organisation in place such as the Charities Regulator is also key in reassuring the public that there is a watchdog overseeing the sector.
Is it difficult to find novel initiatives in the areas of fundraising? What type of initiatives work best from your perspective?
A mix of initiatives generally works best. We divide our fundraising activities across a number of areas from challenge events such as marathons and treks, community-based events such as Relay for Life, corporate sponsorship, monthly givers and the ever-enduring Daffodil Day which is over 30 years old. We have also seen a growth in online fundraising as well as the extremely popular viral campaigns in recent years like the ice bucket challenge and no make-up selfie. There is no winning formula – you just need to keep trying a mix.
Do you think there is a disconnect between the expectations of what patient support groups/charities can achieve with the lack of funding in place for them?
People are often shocked when they realise that we are in the main a self-funding organisation. Our services depend on the time and generosity of thousands of people across Ireland. The most recent stats tell us that by 2045 cancer rates in Ireland may double. We have to grow our services to meet this demand which means we must increase our income.
What Irish Cancer Society campaign are you most proud of?
It has to be Daffodil Day. I don’t think there is another campaign like it in Ireland. Being out and about on that day really makes you feel part of the community that the Society has built over the 50 years it’s been in existence. You hear stories from people, hear the impact that we have had and most of all, feel a renewed sense of hope that we are making inroads in the fight against this horrendous disease.
What campaign from another patient group, in Ireland or further afield, has inspired you in recent years?
Darkness into Light is an amazing event for Pieta House that even has reach far beyond these shores. I also think Laura Lynn and Make a Wish do amazing things for children and run great campaigns. Our Lady’s Hospice, Jigsaw and Irish Guide Dogs are also really impressive in the various ways they campaign.
What is one thing you wish people knew about working in the charity/advocacy sector?
Some people don’t realise that despite their charitable status, charities must be run in a professional and business-like way to ensure that services for patients are specialised, safe and accessible. You’ll work hard but the job satisfaction levels are through the roof!