An overview of Ocumel Ireland, presented at the 2019 CURE OM Symposium.

1. IRELAND
U V E A L
MELANOMA
Joanne Finnegan
Melody Buckley
Brendan Lynch
1

2. Highest incidence rate in the world?
• High incidence rate
In 2016 at the Royal Victoria Eye and Ear
Hospital (RVEEH), Dublin, Ireland, presented
the findings of the first study on the
epidemiology of uveal melanoma at the Irish
College of Ophthalmologists Annual
Conference in Killarney, Ireland. 2012
recorded the highest incidence rate of 17.2
cases per million of population.

3. IRISH OCULAR ONCOLOGY SERVICE
ESTABLISHED IN 2010
Pre 2010 except for those
undergoing removal of eye all
patients sent to the Liverpool, UK.
Since 2010 all patients seen by
Professor Noel Horgan at the
RVEEH Dublin

4. Ocumel Irl
May 2017
3 founding members
1 patient, 1 (spouse of patient) 1 (daughter of patient)
WHY DID OcuMel Irl FORM?
“how do I help keep my loved
one/myelf alive for as long as
possible”
Meet others with UM, Lack of verbal information
from health service – NO written info. Treatments
for CM – no emotional support, poor surveillance,
confusion re; biopsy (before and after),
clarification needed re; genetics of tumor and risk

5. SUPPORTING EACHOTHER
workload/projects
Without exception we and our members prioritize our
own health /treatment and that of our loved ones
1. Face book support page (open and closed)
2. Face book Public page
3. Individual and small group contact FACE TO FACE –
Dublin
4. Website
5. Twitter ( medics, pharma, media, researchers)
UK, European and American Pages advertised in
particular our neighbours in OcuMel UK

6. PROJECTS - ONGOING
Create awareness Hospitals – oncology and eye Depts.
Irish Cancer Society
Optometrists (re annual day dilation)
Research Irish (University College Dublin)
Europe (Institut Curie, Paris)
Clinical Trials for Small European Countries - no standard treatment
Oncologists each believe in their own
pathway and own treatment?
we inform patients about other options if
possible eg, uk centres, second opinions
EU members unable to access clincial trials
outside own country
No Irish Trials

7. PROJECTS – CONTINUED
Surveillance/ treatment pathway
Need standardization
(Sato guidelines given)
Genetics/Biopsy Open communication needed
counselling
Biopsy not taken pre treatment
(pros and cons) options need to be
discussed.
Collaboration lInking in with other UM groups from
finding out about research
seeking collaboration within the research
community
Funding Charity status to be explored again

8. PROJECTS – CONTINUED
Treatment Abroad scheme funding for
private
treatment via
Europe
INTER ORGANISTION example accessing IMCGP100
PATIENT ADVOCACY

9. Goals (3 – 5 years)
Our Plan is to continue to advocate and support
UM patients and families on a volunteer not for
profit basis. To evolve as required but always
keeping the patient at the centre, remaining
independent and impartial, always keeping our
goal of achieving the very best for the
community
We will always put ocumel irl first and not any
one personality.

10. LIAM FINNEGAN BARBER
REST IN PEACE