This is a good opportunity to give my thoughts and feedback about working in this region. I am proud to say that 2007/8 has been a very exciting year: more and more of you are seeking information about the condition as well as enquiring about services out there that would benefit you. This has come about as a result of the volume of phone calls I have received, people from the black community are feeling comfortable to talk about sickle cell; and as more people particularly those living with the condition as well as families/parents with family members/children who have the disease are becoming increasingly educated and less stigmatised, they are able to talk freely about the condition. This is a great achievement on the part of Regional Care Advisors’ outreach work through its health promotion and educational talks, raising awareness, and word is now filtering through to the public and the community. I have to say that all the RCA’s are so committed in the work they do and it’s great to see that our hard work is now paying off. I was very delighted when I received a beautiful letter from Lesley, aged 10 from Hackney. It was very kind and thoughtful of him to do this; I read his letter over and over again; my colleagues at work enjoyed reading it too. Honestly, what is fantastic about this letter is the amount of time he put in just to let me know about his experiences, his sister and how much he loved his mum for being there for him. Please, read his letter on the Users Page. I hope parents/carers would encourage their children/young people to write on any topic that interests them. Good News! Barking & Dagenham, Havering and Redbridge has a permanent Senior Haemoglobinapathy Specialist Nurse now in post; her name is Christine Williams, and she is based at Cedar Centre at King George Hospital. A warm welcome and congratulations to you Christine! We wish her all the best for a well deserved promotion. I am sure we will all benefit from her exceptional clinical knowledge and skills which have been invaluable having worked with people living with sickle cell disease for a long time. October which is Black History month was packed jammed with invitations from schools/colleges, organisations and associations for RCAs to attend various events to give talks or display a stall on sickle cell. One such event was at Petchey Academy (Hackney) where I attended with Mrs C Dickson (Community Development Officer -Hackney Sickle Cell and Thalassaemia Centre). Some pupils have relatives or know of friends living with sickle cell; with others it was their first time hearing about the disease as the class was mixed (black and white pupils) I was at the Black Police Association Event at the Royal Festival Hall, Waterloo with a member of the Sickle Cell Society and her daughter; we displayed leaflets, posters and other literature materials on sickle cell and the screening programme. This is a very popular event within the black community and it was well attended. Some people were kind to make a donation and many acknowledged the good work the Society is doing in the community “Keep up the Good Work” they said. I was also involved in Jeans 4Genes Day, October 5th. What a busy day that was! I gave a talk at a Primary School in Westminster, one mum came along and talked about her experiences with twin daughters who have the condition. Later that same day we rushed to Waterloo with my colleague to shake the bucket – What a fun day; though I was a bit disappointed that people were not very generous with their donations. I also attended the Black History Month at Queens Theatre -Havering, with Cecilia Shoetan (Coordinator – Barking & Dagenham and Havering Sickle Cell Support Group); we had a stall, giving out information and talking to people who attended the event. A BIG THANK YOU to Rotary Club of Tottenham & Wood Green members who gave their time to fundraise for the Society. On a bitterly cold evening in December, we knocked from door –to-door and people donated generously. Sitting inside the beautifully decorated carriage with all its glittering Christmas lights was Father Christmas. We also had Christmas carols blaring as we drove along the streets. It was such a spectacular sight! My colleague, Iyamide and I were privileged to be invited as guests with other voluntary organisations to attend the Rotary Club Dinner held in February where we were presented with a cheque of the money raised.
Comfort Ndive
Mobile: 07841 558 612
Email: comfort.ndive@sicklecellsociety.org