As most of you would know already, we have been working alongside the Sickle Cell Society for two major partnerships, our NHS Screening Contract and the All Party Parliamentary Group (APPG). For the Screening contract we are partnered with Ms Iyamide Thomas, a dynamic individual, who brings her years of knowledge and experience to the table.
Iyamide has been working alongside our team for a number of years and our joint collaboration has successfully managed the huge workload associated with this project to bring about outstanding results. Together, the ’Parents ‘Stories’ and other pertinent publications were produced.
This year we will be concentrating mainly on supporting the work of the Screening Programme and the New-born Outcomes System (NOC) which supports the referral of babies with thalassaemia and sickle cell into care when the baby is diagnosed.
A new electronic system has been developed to flag the results of the 5-day heel prick test (new-born blood spot screening) currently done on all new babies. New-born blood spot screening involves taking a blood sample to find out if your baby has 1 of 9 rare but serious health conditions. Once diagnosed, the results are automatically forwarded to the clinician responsible for the child. This is particularly important as it ensures that the parents are referred for counselling earlier and the child gets access to treatment immediately (penicillin etc)
The system being introduced is linked to the National Haemoglobinopathy Registry (NHR), and it is vital that the parents and families are aware of the importance of the registry itself. One of our tasks will be to ensure that this information is shared with all our members/ interested families.
The societies will also be working together to create handbooks or parents’ guide for both conditions. While we will be working to create separate handbooks, this will be done as a joint project as some of the information included will be similar to both conditions. Happy to report that we have the support from most of our consultants for this project.
Iyamide and I will be looking for volunteers for the focus and support groups so please get in contact with either of us, if you are interested.