Guidance

SCID screening evaluation: checklists for immunology services and teams

Published 20 August 2021

Checklists for clinical immunology services and teams when screening laboratories refer a baby with a higher chance result for severe combined immunodeficiency (SCID) following routine NHS newborn blood spot (NBS) screening.

Immunology services and teams should record the information as described in these checklists so records are consistent as part of the SCID screening evaluation in England. Following this guidance will also help make sure the correct information is provided at the right time to parents and carers.

Checklist 1: information about babies

Services should record the following information:

• baby’s name:(add name)
• baby’s date of birth (DOB): (dd/mm/yyyy)
• baby’s address: (add details)
• baby’s NHS number: (add details)
• name of hospital: (add details)
• birth location: (add details)
• gestation: (weeks and days)
• weight: (in grams)
• mother’s name and DOB: (add name and DOB)
• father’s name and DOB: (add name and DOB)
• family history of SCID: (add information about any family history of SCID)
• SCID screening result: (add result)
• date of SCID screening result: (dd/mm/yyy)
• date family informed: (dd/mm/yyyy)
• GP details: (GP name and surgery)
• information sent to GP: (yes/no)
• health visitor (HV) details: (add name)
• information sent to health visitor: (yes/no)
• is a translator needed: (add details where appropriate, including language)

Checklist 2: referral to diagnostic testing following a higher chance result

Clinical immunology services and teams will organise an appointment date and time for the baby and family for diagnostic testing (flow cytometry) following a higher chance result. Parents and carers will be contacted by phone call before being seen in clinic.

The phone call is to offer them an appointment either the same day as the phone call, or the next day.

Teams should not offer appointments to parents and carers unless they are the same day or following day. For example, teams should only call parents and carers on a Friday if an appointment can be made for later that day or the Saturday. If neither of these options is possible, teams should wait until after the weekend to contact parents and carers.

If the baby is unwell or is in hospital then teams need to liaise with the local hospital to arrange the appointment.

Checklist 2a: higher chance phone call

At the beginning of the phone call you should:

• explain who you are and where you’re from
• ask if both parents are present (if they are then ask to speak to both)
• make general enquiries about the baby’s health

Immunology services and teams should sign and date a copy (print or digital) of these 14 points to confirm they have been discussed with parents and carers, and keep a record.

1. Confirm baby’s name.

2. Confirm baby’s date of birth.

3. Remind parents their baby had the ‘heel prick’ when he/she was 5 days old.

4. One of the results of the ‘heel prick’ test has come back suggesting there is a higher chance that their baby has one of the conditions tested for.

5. A higher chance result means it is more likely, but not certain, that their baby will have the condition.

6. The heel prick shows their baby has a higher chance of having a condition called severe combined immunodeficiency (SCID).

7. SCID makes it very hard to fight off infections like pneumonia and meningitis.

8. Not caused by anything they did before or during pregnancy.

9. Be reassured that it is safe to wait until they are seen by clinical team later today, or tomorrow.

10. Your baby needs an appointment for another test which will tell us for sure if your baby has SCID or not.

11. Ask them if they are able to write their appointment details down. Give them the date and time (which will be later today or tomorrow). Check they have written it down.

12. Advise parents to write down any questions they think of before the appointment that they can ask on the day.

13. Ask them for an email address or mobile phone number to send written confirmation of their appointment details, a summary of this phone call and links to further information about SCID.

14. Give them the contact name and telephone number of the clinical team.

Checklist 3: babies newly diagnosed with SCID

Use is dependent on the flow cytometry.

Name of person communicating result: (add name)

Signature: (digital signature)

Profession of person communicating result: (consultant/nurse/GP/HV)

Method of communication: (home visit/telephone)

Location of baby: (home/hospital/other)