As planned, the fourth ASYABI annual public conference for Sickle Cell took place in Leeds on Saturday 20th August 2011. This event has welcomed varieties of delegations from London and Birmingham including an increase audience from Leeds and across the Yorkshire.
The event was presented by Denis Hodge, a professional presenter from UK country Radio.com, which is based in the Yorkshire and varieties of cultural things took place such as, a live performance of Harmony Choir, a mix group of singers in Leeds, Kathryn performance, who so far had been performed at XFactor, pre-selection including the hip hop performance of the ASYABI Chairman, Olivier Mmounda.
The ASYABI would like to acknowledge the continuing support of other sickle cell organisations across the UK such as Oscar Birmingham through his Chairman, Ajay Dattani, who was one of the speakers of the conference. He did a testimony on his with sickle cell. Dr. Asa’ah Nkohkwo, Nationwide Adviser and formerly CEO of the Sickle Cell Society in London, did a presentation on the New updates of Department of Health linked to Sickle Cell. On his presentation, which should be taken 20 to 30 minutes, but went nearly to an hour because of the complex new updates in which the data base provided by the government shown that less than 5,000 patients with sickle cell are registered in the govt data base. These statistics have a huge negative impacts in term of the allocations of funds for the improvement of care and social care of those who are affected by this condition in the UK. These numbers in which the government relies on to make decisions may have long run impacts on patients because the current number of patients and according to NGOs, in the UK there are 12,500 to 14,000 of patients with sickle cell.
The former CEO of the Sickle Cell Society known as the UK’s largest voluntary group on this issue, which entered a few years ago into a formal partnership with the Department of Health to provide varieties of direct services connected to the social aspects needs of those affected by this condition in the UK and especially in London where they are based. He was also too keen to express the view that the ASYABI growing campaigns of evangelising and raising awareness of Sickle Cell has a clear need of an office to bring patients together as well as to encourage them to get registered to tackle progressively the current data base in which the government relies on.
He has also advised the ASYABI team to multiply their actions through different kind of events in order to reach patients and families who are affected by this condition in Leeds and across the Yorkshire; as well as to encourage them to understand that they have themselves a huge responsibility to play and it is important for all patients to give their consent for the government to access their data base for sickle cell to get the full attention that it needs in term of the improvement of services for care as well as to increase the support of voluntary groups of patients across the country for the social aspects of the condition in which the huge stigma linked to it lead many patients to be hospitalised repeatedly and only a strong based of patients groups and voluntary groups can be best to play this role of what he called “the challenges after the hospital”.
The ASYABI event has also welcomed different delegates such as representatives au CEDCOW in London, which provides various of services to those affected by sickle cell there, for: accommodations, benefits etc. including the Chair of Women Restoration, Tecla Chishugi, who has given a talk on her work, which provides counselling and advice to those who are survivors of wars from developing countries who are living in the UK.
Without all of you, we could not make it, so we thank you all of you for your huge support and contribution for the success of this event and we would like to acknowledge local funders such as the Leeds Community Foundation and the Well-Being Funds for their continuing support to our marginal cause.
NB: A video on the event will be available on YouTube in the beginning of September 2011.
Report made by,
The ASYABI Team