For the Ongoing Management of Babies under 1 year old.

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Shanon O’Neal’
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1 Pathway Author: Nicy Turney, Senior Nurse Professional Lead, Health Visiting For the Ongoing Management of Babies under 1 year old. Check Health Records (CHR) to undertake daily checks to identify: Babies <32 weeks gestation with no record of repeat CHT Screen All babies up to 1 year moving into the area from abroad or from within the UK with no documented decline or record of all England screens e.g. tests provided. Healthy Together team for children over 28 days (*Babies >8 weeks do not test for CF) Clinician to check own data systems before offering appointment to ensure that the test has not already been undertaken and that parents have received the leaflet Screening Tests for you and your Baby. *If there is any doubt a child has had a full screen of all conditions in England a retest must be offered. The family Public Health Nurse(HV) is accountable for telephoning the local blood spot tester and requesting a blood spot test. Once this has been confirmed it can be documented. For repeat blood spot tests the standard requires for these samples to be repeated is within 72 hours of the request.. This request is a priority contact because of the cut off date for a CF at 8 weeks or all tests before 1yr. For movement in from abroad the test should be undertaken as a priority and undertaken within a week of notification.. Appointment Offered Parents accept Unable to contact parents following 2 invitation letters and/or phone calls Parents decline Blood spot taken and recorded in the PCHR (Red Book) and recorded on electronic record. Send standard no contact/discharge letter to the parent and GP (see SystmOne) Record verbal decline on blood on SystmOne and inform child health Record on SystmOne and task Child Health Records and Public Health Nurse(HV) Screening card to be completed by midwife if initial test is declined and send LAB. *Not applicable for movements in* Child Health Records to stop reminder being sent to Public Health Nurse(HV) Record to be made in PCHR (Red Book) if available Normal Result Inadequate sample Abnormal result Task Child Health Records Normal result all conditions Child Health Record initial sample Dept will send a letter of confirmation to parent Public Health Nurse (HV) at 6 weeks documents test results on the child s record and in the PCHR (Red Book) Repeat test Specialist Paediatrician to see parents and arrange appropriate follow up LAB to inform Specialist Paediatrician and GP Child Health Records notified who then record the information SystmOne Child Health Records record the decline onto the system letter to confirm decline of screen sent to parent from CHRD If for a child under a year of age, there are documented results (or declines) for all five conditions screened for in England before the expansion of the programme (SCD, CF, CHT, PKU and MCADD), screening should not be offered for the four additional inherited metabolic diseases (MSUD, IVA, GA1 and HCU).

2 Introduction: Healthy Together is the name for Leicestershire Partnership NHS Trust (LPT) s 0-19 public health services for children, young people and their families. Healthy Together has been commissioned by Public Health England to offer blood spot tests to those who require repeat tests post 28 days and for movements in from abroad under 1 year ( 365 days)who have not received the tests Process Within Heathy together we have a small team of blood spot testers that have undertaken additional training, competency frameworks and undertaken an LCAT practice assessment. To maintain their competency they must continue to use the skill in practice and attend the Healthy together Blood Spot Testers Meeting twice yearly. All public health nurses (health visitors) are aware of the pathway as it is embedded within the Standard operating Guidance All new starters (PHN HV) to the organisation received a training session on the standards and process within Healthy Together. Governance Child Health and a representation from Healthy together attend the Antenatal and Neonatal Screening Meeting chaired by Public Health. Minutes of this meeting are reported through Patient Safety. The national standards that underpin this practice are attached.

NHS Newborn Blood Spot Screening Programme Procedures for newborn born blood spot (NBS) screening of babies under a year of age, for whom screening results are not available April 2016 1. Policy 1.

3 NHS Newborn Blood Spot Screening Programme Procedures for newborn born blood spot (NBS) screening of babies under a year of age, for whom screening results are not available April Policy 1.1 This policy has been updated to reflect the expansion of newborn blood spot screening in England in January 2015 to include four additional inherited metabolic diseases (maple syrup urine disease (MSUD), isovaleric acidaemia (IVA), glutaric aciduria type 1 (GA1) and homocystinuria (HCU)). It will be reviewed if all four UK countries introduce screening for these conditions. 1.2 The policy applies equally to all infants resident in England, whether born in England, other countries of the UK, or born abroad. 1.3 Babies born outside England may have been screened as part of routine screening in their country of birth for the five conditions screened for in England before the expansion of the programme (sickle cell disease (SCD), cystic fibrosis (CF), congenital hypothyroidism (CHT), phenylketonuria (PKU) and medium-chain acyl-coa dehydrogenase deficiency (MCADD)). 1.4 For some infants, NBS screening is inadvertently not carried out or the results are missing. 1.5 If a child is under a year of age (up to but not including their first birthday) and has no documented results (or declines) for all five conditions screened for before the expansion of the programme, screening should be offered for all the untested conditions (including the four additional inherited metabolic diseases) only if the blood spot sample can be taken before they reach a year of age. 1.6 If parents accept screening and the blood spot sample is taken, the screening laboratory will perform all processes until screening has been completed for all the conditions this includes processing initial samples received in the laboratory on or after the child s first birthday and requesting and processing repeat samples if required. Public Health England leads the NHS Screening Programmes 1

4 1.7 The cut-off at a year of age is largely a pragmatic decision, backed up by professional consensus that there are still benefits of screening older infants and children, but these become less with age. 1.8 Screening might not be possible for CF. For babies older than 8 weeks, the routine screening test for CF (IRT) is no longer reliable and so this test will not be done in babies over 8 weeks of age. 1.9 If for a child under a year of age, there are documented results (or declines) for all five conditions screened for in England before the expansion of the programme (SCD, CF, CHT, PKU and MCADD), screening should not be offered for the four additional inherited metabolic diseases (MSUD, IVA, GA1 and HCU) The expectation is that a sample should be taken from a baby with incomplete results for SCD, CF, CHT, PKU and MCADD and the results of this sample (that will now be screened for all nine conditions) be recorded on the child health information system equal to or less than 21 calendar days of movement in being recorded on the child health information system. 2. Procedures 2.1 Seeking results for SCD, CF, CHT, PKU and MCADD In most cases where there is no documented result, the child has probably been tested, with a normal result, but for one reason or another, this is not available. Only results documented in English should be accepted. All reasonable attempts should be made to find the results, however this should not unduly delay screening When the results of NBS screening are not immediately available, there are a number of places they can be sought If the mother does not have the results, ideally recorded in the personal child health record (PCHR), the first place to start should be the previous health visitor and/or child health records department (CHRD). If they do not have the results, at least they will know which midwifery department would have been responsible for taking the sample and therefore the relevant screening laboratory. It is unlikely the GP will have the results if the mother doesn t. 2.2 Taking the sample If the results cannot be found after recourse to all these possible sources, a sample should be taken, using the NBS screening card and sent to the screening laboratory. Parents should be offered screening for all nine conditions. Families can decline 2

5 individual conditions (CHT, SCD, CF) or ALL the inherited metabolic diseases (PKU, MCADD, MSUD, IVA, GA1 and HCU) All commissioners and relevant service providers should ensure that there are staff trained and responsible for taking blood spots in infants, no longer the responsibility of the midwifery unit The laboratory will test the sample and report the results to the child health records department. The laboratory will test for all nine conditions (eight if over 8 weeks old), irrespective of which of the following have already been tested for SCD, CF, CHT, PKU and MCADD. 2.3 Recording The results should be recorded in the PCHR and all other relevant records If the parents decline the offer of testing, this should be recorded in the PCHR and all other relevant records If the child is over 12 months old, note should be made of the missing results and that the parents have been given the appropriate advice. 3. Advice to parents 3.1 The exact details need to be phrased in the light of the individual circumstances, but the following points need to be made to parents. 3.2 If the baby is over twelve months old, the parents should be told that we do not know if their baby has been tested for all conditions, and that we do not recommend testing after 12 months for the reasons above. This will be recorded in the child s clinical notes and on the child health information system. 3.3 All babies up to a year old should be offered screening for the conditions we routinely screen for at 5-8 days old in England if they do not have documented results for SCD, CF, CHT, PKU and MCADD. However, not all the tests are as reliable as when carried out at 5-8 days of age. 3.4 The test for sickle cell disease can be carried out at any age and is equally reliable in older children. 3.5 The screening test for CF is unreliable after a baby is 8 weeks old. Older babies with CF may have normal results. If a child has repeated chest infections or diarrhoea, medical advice should be sought and a test for cystic fibrosis may be arranged. This 3

6 test is more complicated than the screening test and so it is not carried out on all babies. 3.6 The screening test for CHT becomes less reliable in older babies. This means that some older babies with CHT may not be picked up. An alternative test can be done on babies who have symptoms suggestive of CHT, e.g. prolonged jaundice, developmental delay, etc. 3.7 The test for PKU can be carried out at any age and is equally reliable in older children. This is also applicable to the four additional inherited metabolic diseases (MSUD, IVA, GA1 and HCU) in most cases. 3.8 The screening test for MCADD becomes less reliable in older babies. This means that some older babies with MCADD may not be picked up. 3.9 If parents decide not to accept the offer of screening, or the baby is over twelve months old, this should be recorded in clinical notes and on the child health information system. Parents should be asked to seek medical advice and remind staff that their baby has not been tested if their baby has signs of chronic health problems such as developmental delay, chronic diarrhoea or repeated lower respiratory tract infections. 4. Summary 4.1 All babies under one year old should have documented results for SCD, CF, CHT, PKU and MCADD. 4.2 If all the results cannot be found, the baby should be screened for SCD, CF, CHT, PKU and MCADD and the four additional inherited metabolic diseases (MSUD, IVA, GA1 and HCU). 4.3 If the results for SCD, CF, CHT, PKU and MCADD can be found, screening should not be offered for MSUD, IVA, GA1 and HCU. 4.4 Parents should be informed that the results may not be as reliable as when taken at the correct age. 4

Newborn Bloodspot Screening Information for parents

Newborn Bloodspot Screening Information for parents You will be offered a bloodspot screening test for your newborn baby for several rare but serious conditions. The sample for this test is usually taken