Blood spot screening

Every baby is offered newborn blood spot screening, also known as the heel prick test, ideally when they are five days old. Newborn blood spot screening involves taking a blood sample to find out if the baby has one of nine rare but serious health conditions. Most babies will not have any of these conditions but, for the few who do, the benefits of screening are enormous.

Early treatment can improve their health and prevent severe disability or even death. When the baby is five days old, a health professional will prick their heel and collect four drops of blood on a special card. The blood spot test screens for the following rare conditions:

• sickle cell disease (SCD)
• cystic fibrosis (CF)
• congenital hypothyroidism (CHT)
• phenylketonuria (PKU)
• medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
• maple syrup urine disease (MSUD)
• isovaleric acidaemia (IVA)
• glutaric aciduria type 1 (GA1)
• homocystinuria (HCU)

In some parts of England, Health Visiting services, which are no longer part of an integrated Community System with a CHIS module, may no longer receive the screening information/results directly.

It is important to note that existing processes for laboratories communicating results with the CHIS, and the CHIS communicating results with parents, will not change. Your existing processes will continue, but you will now receive results directly into your system for all children in your cohort, even from out of area laboratories.

It is recommended that any AS IS interim processes that you may have in place for any children moving into the area (through any existing shared CHIS link to outside areas/hospitals) are continued until all CHIS/Health Visitor Services are live with NEMS.

NEMS receives blood spot results from the database underlying the National Blood Spot Failsafe System (NBSFS). The NBSFS receives blood spot results directly from the laboratories. Once results information has been received from NBSFS, there are three data flows being automated and these need to be considered separately as different working practices are in use:

1. Data flow to CHIS direct from the laboratory
2. Data flow to health visitors from CHIS
3. Data flow to parents either from health visitors or from CHIS

The way NEMs works as a distribution engine for results is that:

• Each child is registered direct to a CHIS and a health visiting service at birth. This is done via NEMS with the birth notification produced by PDS. NEMS ‘knows’ which CHIS or health visiting system the child belongs to based on GP registration and postcode. These are called generic subscriptions.

• When Northgate publish their ‘day 13 and over’ results to NEMS on day 14, the NEMS routes the results to those systems having a generic subscription for a child
• If a result does change, Northgate would publish a further message set to supersede the first result, ensuring the data is always up-to-date

Messages received through this release will mean that the CHIS and health visiting service will receive blood spot results automatically when published at day 14. This will improve the availability of information to clinicians and improve the decision-making and effectiveness of interventions.

This table lists the data fields in the blood spot screening results message.

This table helps you to identify the potential benefits receiving blood spot screening results via NEMS . The level of benefit depends on your current processes.