Aug 28th: Thal NSW meets SCTI Ireland

As is usual in Ireland, a cup of tea is the most popular brew for a catch-up and we met in the lovely surrounds of the old Gresham hotel.

Lora told me that there are approximately 600 patients in Ireland. The majority of cases relate to sickle-cell anaemia.

SCTI focusses a lot of effort on preventative education ensuring the public, but especially newly arrived communities, are aware of the conditions and testing for genetic traits. Awareness levels vary quite a lot and work is needed to increase awareness among the public at large.

SCTI have run some targeted campaigns with education leaflets for GPs,  workshop seminars for ambulance staff and a partnership with the Saudi Student Association. St. James Hospital in Dublin provides lectures for GPs and SCTI attends to present at these lectures and usually brings along sickle cell patients to provide a direct lived experience or sometimes a CNC. The workshop for ambulance staff was very useful as the staff were able to ask patients specific quesitons about how they feel and how they wish to be treated during an infection period or crisis.  

SCTI run patient and adult support groups, with mixed levels of engagement. This is okay as patients have the choice to engage and it is important that they know the groups are available if needed. This experience is simialr in NSW. Other patient activities include gifts for Christmas time and sometimes a festival around Africa Day.

For patients the main concerns are costs of transport, accommodation and child minding as treatment centres are located in Dublin, and they have to travel up from different parts of the country.

SCTI is voluntary run organisation.

Lora was a lovely host and our hope is that our two Societies can continue to share information and support. Thak you to Lora Wogu for meeting with me in Dublin along with two lovely Youth Ambassadors - Mary and Joseph. 

For more information on Sickle Cell and Thalassaemia Ireland visit: 

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