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Slide 1: Newborn Bloodspot Screening Training Presentation This presentation has been produced by Newborn Bloodspot Screening Wales for the training of health professionals who are involved in newborn bloodspot screening. It is recommended that all four sections of the presentation are delivered to health professionals who take newborn bloodspot screening samples. The presentation will take up to two hours to be delivered, which allows time for questions and for discussions using the scenarios. The first two sections of the presentation would be appropriate for health professionals who are involved in newborn bloodspot screening, but who don’t have responsibility for taking the samples. The information has been produced with thanks to the NHS Newborn Blood Spot Screening Programme.

Slide 1: Newborn Bloodspot Screening Training Presentation ...€¦ · Slide 1: Newborn Bloodspot Screening Training Presentation ... These leaflets and other CHT information can

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Slide 1: Newborn Bloodspot Screening Training Presentation

This presentation has been produced by Newborn Bloodspot Screening Wales for the training of health professionals who are involved in newborn bloodspot screening.

It is recommended that all four sections of the presentation are delivered to health professionals who take newborn bloodspot screening samples.

The presentation will take up to two hours to be delivered, which allows time for questions and for discussions using the scenarios.

The first two sections of the presentation would be appropriate for health professionals who are involved in newborn bloodspot screening, but who don’t have responsibility for taking the samples.

The information has been produced with thanks to the NHS Newborn Blood Spot Screening Programme.

Slide 2: Aims

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Slide 3: Introduction to Newborn Bloodspot Screening

The photograph shows a sample of blood being taken for newborn bloodspot screening (NBS).

Slide 4: Objectives

Slide 5: What is Screening?

Slide 6: What is newborn bloodspot screening?

The sample should be taken on day 5 of life because the earlier the sample is taken, the earlier the baby can be referred for specialist care.

In exceptional circumstances, if it is not possible to take the sample on day 5, the sample must be taken between day 5 and day 8. An example of this would be if the baby has had a blood transfusion.

It is important to emphasise that the day of birth is counted as day 0 when determining the correct time to take newborn bloodspot screening (NBS) samples.

The day of birth (day 0) is from midnight to midnight and so the time of birth does not affect this.

In some maternity units the day of birth is counted as day 1 and this can sometimes cause confusion when determining the correct time to take samples.

If the date of birth is counted as day 1 this would mean that a routine bloodspot sample taken on day 5 using this calculation, would actually be taken on day 4 which is too early. The laboratory will request a repeat sample for any routine sample taken before day 5.

Slide 7: What is the aim of newborn bloodspot screening?

Slide 8: Principles of newborn bloodspot screening

The purpose of screening is to identify babies more likely to have the conditions.

These babies can then be referred to clinicians for diagnostic tests and treatment.

The benefits of newborn bloodspot screening are that babies who have any of the conditions can receive early specialist care and treatment to improve their health and prevent the severe disability associated with some of the conditions. This screening is therefore strongly recommended.

It should be emphasised that the benefits of screening rely on a good quality sample being taken at the right time and reaching the laboratory without delay.

Although parents are able to decline screening for all or specific tests it is important to note that screening for all the inherited metabolic disorders is offered as one test. This means that parents cannot choose for their baby to be screened for only some of the inherited metabolic disorders.

All results should be discussed with the parents and should be entered into the baby’s Personal Child Health Record so that there is evidence of the bloodspot screening result.

Slide 9: Limitations of screening

Slide 10: Who is eligible for newborn bloodspot screening?

All newborn babies are eligible for newborn bloodspot screening. Eligible newborn babies are defined as:

• A baby who is resident in Wales at day 5-8 of life

• A baby who is resident in Wales at day 5-8 of life, but is registered with an English GP

• A baby whose usual place of residence is outside Wales if they are under routine midwifery care in Wales at day 5-8 of life

If babies up to one year of age are identified as being eligible for screening, it is very important that offer of screening and sample collection is arranged at the earliest opportunity. This is to minimise the time before babies affected with any of the conditions can be referred into clinical care.

All eligible babies approaching one year of age should be offered screening promptly even if this means that the sample is taken after 12 months of age. However, the laboratory will only test samples taken from babies up to 13 months of age.

If the sample is taken between 12 and 13 months of age the following action must be taken:

• Record baby’s age on the bloodspot card

• Inform the Wales Newborn Screening Laboratory:

• Roanna George – Tel 029 2074 3561 Email: [email protected]

• Dr Stuart Moat – Tel 029 2074 3562 Email: [email protected]

This guidance is included in the Newborn Bloodspot Screening Pathway which can be found in the NBSW Health Professional Information Pack and on the NBSW website.

Slide 11: Who else is eligible for newborn bloodspot screening?

It is important to emphasise that all babies up to the age of one year who move into Wales from outside the UK are eligible for newborn bloodspot screening. This is regardless of whether or not they have had newborn bloodspot screening overseas.

Babies who move into Wales from the Republic of Ireland are also eligible even if there is evidence of a newborn bloodspot screening result tested in the Dublin newborn screening laboratory.

Babies up to the age of one year who move into Wales from England, Scotland or Northern Ireland are not eligible if there is evidence of a newborn bloodspot screening result or decline (sample tested in UK newborn screening laboratory).

Screening for CF is only offered for babies up to 8 weeks of age because the test is unreliable after this time. Newborn bloodspot screening for CF relies on the analysis of immunoreactive trypsinogen (IRT) which is significantly increased in newborns affected by CF, during the first few weeks of life. IRT becomes unreliable as an indicator for CF after eight weeks of age.

The baby’s newborn bloodspot screening test result report will state if the baby has not been tested for CF due to the baby being older than eight weeks of age at the time of sampling. When the other newborn screening test results are given and recorded in the baby’s personal child health record, the health visitor should notify the family that the baby has not been screened for CF.

Should the family, midwife or health visitor have any concerns about the baby’s health in relation to CF (e.g. persistent cough, recurrent bronchial infections or failure to thrive) then the baby should be referred to their GP. The possibility of cystic fibrosis should be investigated as a matter of urgency.

It is important to note that any baby with a persistent cough, recurrent bronchial infections or failure to thrive should be referred to their GP even if they have been screened for CF and have had a ‘not suspected’ result for this condition.

Slide 12: Newborn Bloodspot Screening Wales System (NBSWS) Failsafe

The Newborn Bloodspot Screening Wales System (NBSWS) Failsafe was introduced on 5th February 2014. The purpose of this is to ensure that every baby in Wales is screened.

This system is not intended to replace any failsafe systems that are in place locally. It is very important that these remain in place.

NBSWS matches bloodspot test data from the newborn Screening Laboratory system with the register of births on the Newborn Database.

The day 14 lists are generated on every working day (Monday to Friday) and the relevant maternity units are contacted by the regional Newborn Screening Administration Failsafe teams, so that babies who have not had a bloodspot card received in the laboratory can be followed up to ensure appropriate action is taken. Timely responses by health professionals in the health boards are essential to minimise any further delays in screening.

The failsafe also identifies other groups of babies which require follow up. For example, if a repeat sample has been requested by the laboratory and has not been received within a specified time, the baby will be identified and then followed up.

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Slide 13: What conditions are screened for in Wales?

This slide lists the conditions that babies are screened for in Wales.

Screening for the following conditions was fully implemented in Wales as follows:

• CHT 1981

• CF December 1996

• MCADD June 2012

• PKU 1970

• SCD June 2013

Screening for the following four inherited metabolic disorders started in mid-January 2015:

• Glutaric aciduria type 1 (GA1)

• Homocystinuria (pyridoxine unresponsive) (HCU)

• Isovaleric acidaemia (IVA)

• Maple syrup urine disease (MSUD)

There is more than one type of HCU. Newborn bloodspot screening tests for only one type – the pyridoxine unresponsive HCU.

It is important to ensure that it is known that newborn bloodspot screening for Duchenne Muscular Dystrophy (DMD) ceased in Wales at the end of 2011.

Slide 14: Congenital hypothyroidism (CHT)

Treatment for CHT should start by day 17 of life. However, for affected babies who have an initial borderline result for CHT and then require a repeat CHT bloodspot sample, treatment should start by day 24.

Further information about congenital hypothyroidism can be found in the NBSW leaflets:

• ‘Newborn Bloodspot Screening – Information for parents’

• ‘Congenital Hypothyroidism (CHT) Information for Health Professionals’

These leaflets and other CHT information can be found on the NBSW website:

www.newbornbloodspotscreening.wales.nhs.uk

The Health Professional Information pack has been produced for health professionals who are involved in newborn bloodspot screening in Wales.

The pack contains the ‘Congenital Hypothyroidism (CHT) Information for Health Professionals’ leaflet and the information leaflets about the other conditions screened for in Wales.

The packs can be found on the website and can be requested via email: [email protected]

Slide 15: Cystic fibrosis (CF)

Further information about cystic fibrosis can be found in the NBSW leaflets:

• ‘Newborn Bloodspot Screening – Information for parents’

• ‘Cystic Fibrosis (CF) Information for Health Professionals’

These leaflets can be found on the NBSW website:

www.newbornbloodspotscreening.wales.nhs.uk

The Health Professional Information pack has been produced for health professionals who are involved in newborn bloodspot screening in Wales.

The pack contains the ‘Cystic Fibrosis (CF) Information for Health Professionals’ leaflet and the information leaflets about the other conditions screened for in Wales.

The packs can be found on the website and can be requested via email: [email protected]

Slide 16: Inherited Metabolic Disorders (IMDs)

On 9 May 2014 the UK National Screening Committee (UK NSC) announced its recommendation to screen every newborn baby in the UK for an additional four inherited metabolic disorders. This recommendation followed evidence provided by the Expanded Newborn Screening pilot project in England.

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Slide 17: Screening for the IMDs

The screening tests for all six IMDs are carried out using a single punch from the card. It is therefore not possible to separate the tests out so that only some of the IMDs are screened for.

Slide 18: Medium-chain acyl-CoA dehydrogenase deficiency (MCADD)

Further information about MCADD can be found in the NBSW leaflets:

• ‘Newborn Bloodspot Screening – Information for parents’

• ‘Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCADD) Information for Health Professionals’

These leaflets and other MCADD information can be found on the NBSW website:

www.newbornbloodspotscreening.wales.nhs.uk

A separate PowerPoint presentation providing more in depth information about MCADD has been developed and is accessible from the website.

The Health Professional Information pack has been produced for health professionals who are involved in newborn bloodspot screening in Wales.

The pack contains the ‘Medium-Chain Acyl-CoA Dehydrogenase Deficiency (MCADD) Information for Health Professionals’ leaflet and the information leaflets about the other conditions screened for in Wales.

The packs can be found on the website and can be requested via email: [email protected]

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Slide 19: MCADD

Slide 20: Phenylketonuria (PKU)

Further information about phenylketonuria can be found in the NBSW leaflets:

• ‘Newborn Bloodspot Screening – Information for parents’

• ‘Phenylketonuria (PKU) Information for Health Professionals’

These leaflets can be found on the NBSW website:

www.newbornbloodspotscreening.wales.nhs.uk

The Health Professional Information pack has been produced for health professionals who are involved in newborn bloodspot screening in Wales.

The pack contains the ‘Phenylketonuria (PKU) Information for Health Professionals’ leaflet and the information leaflets about the other conditions screened for in Wales.

The packs can be found on the website and can be requested via email: [email protected]

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Slide 21: GA1, HCU, IVA and MSUD

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Slide 22: Benefits of screening for the additional IMDs

It should be emphasised that the benefits of screening rely on a good quality sample being taken at the right time and reaching the laboratory without delay.

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Slide 23: Implications for other members of the family

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Slide 24: What should happen if there is a family history of an IMD?

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Slide 25: Contact details for the Wales Newborn Screening Laboratory

Contact details for the Wales Newborn Screening Laboratory

Health professionals should use the following contact details:

1. For clinical enquiries and when notifying the laboratory of:

• Family history of an IMD

• Earlier bloodspot sample taken due to family history of IMD:

Roanna George, Principal Clinical Scientist:

Telephone - 029 2074 3561

Email - [email protected], or

Dr Stuart Moat (Consultant Clinical Biochemist), Director of Wales Newborn Screening Laboratory:

Telephone – 029 2074 3562

Email – [email protected]

2. To check that a sample has been received, or for any queries about demographic information on a bloodspot card -

Telephone – 029 2074 4032

Laboratory Fax number – 029 2074 4065

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Slide 26: Family history of an IMD - Action required after birth

If an earlier bloodspot sample is required ‘Family history of (state specific condition)’ must be recorded on the screening card.

The sample should be sent to the laboratory of the hospital in which the baby was born. The local laboratory will then arrange transport to ensure sample reaches Newborn Screening Laboratory within specified time.

Both laboratories should be informed so they know to expect the sample.

The protocol for screening babies with a family history of the IMDs will be available on the NBSW website.

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Slide 27: Sickle cell disorders (SCD)

The following leaflets and other SCD information can be found on the NBSW website www.newbornbloodspotscreening.wales.nhs.uk:

Health Professional Information leaflets

• Sickle Cell Disorders (SCD) Information for Health Professionals

• Sickle Cell Disorder Referral Guidelines

• Change to the Newborn Bloodspot Screening Pathway in Neonatal Units in Wales

Parent Information leaflets

• Newborn Bloodspot Screening – Information for parents

• Information for Parents – A Sickle Cell Disorder is Suspected.

Please note that this leaflet is intended for parents of babies who are suspected of having a sickle cell disorder following their newborn bloodspot screening, and is not a general information leaflet.

The Health Professional Information pack has been produced for health professionals who are involved in newborn bloodspot screening in Wales.

The pack contains the ‘Sickle Cell Disorders (SCD) Information for Health Professionals’ leaflet and the information leaflets about the other conditions screened for in Wales.

The packs can be found on the website and can be requested via email: [email protected]

Slide 28: SCD - Newborn bloodspot screening pathway in neonatal units

Every baby admitted to a neonatal unit in Wales (on day 0-4 of life) should have a single bloodspot sample taken on admission. This sample must be labelled ‘pre-transfusion sample’, kept and then attached to the routine newborn bloodspot sample taken on day 5 of life, (counting day of birth as day 0). Both samples should then be sent to the Newborn Screening Laboratory for analysis.

The routine day 5 bloodspot screening sample is not a repeat sample just because the pre-transfusion sample has been taken, and so should not be marked on the card as such.

It should be emphasised that both the pre-transfusion sample and the routine newborn bloodspot sample (stapled together) should be sent to the Wales Newborn Screening Laboratory, even if the baby did not have a transfusion in the period between the pre-transfusion sample and the routine bloodspot sample.

The pre-transfusion sample should be stored as per local policy in such a way as to ensure that it is sent to the laboratory with the routine sample. The sample must not be stored in a plastic envelope/poly pocket.

If a baby is discharged or transferred from the neonatal unit before the routine newborn screening sample is due to be taken, the pre-transfusion sample should be sent to the laboratory by the neonatal unit staff, and this should be documented in the baby’s notes and discharge summary. The health professional who later takes the routine sample should record on the bloodspot card that the baby has had a pre-transfusion sample taken in the neonatal unit. This makes the laboratory aware so that they can match the pre-transfusion and routine NBS samples together.

Further Information for Neonatal Units can be found on the NBSW website:

‘Change to the Newborn Bloodspot Screening Pathway in Neonatal Units in Wales as a result of the implementation of Newborn Bloodspot Screening for Sickle Cell Disorders in Wales’.

Slide 29: Gaining informed consent for newborn bloodspot screening

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Slide 30: Gaining informed consent for NBS

Slide 31: Why is informed consent required?

Slide 32: What is required to gain informed consent?

Consent from a person who has parental responsibility will be required in all cases, as consent is being obtained on behalf of the baby. Legally, you only need consent from one person with parental responsibility, although clearly it is good practice to involve both parents in the decision process.

The Children Act 1989 sets out who has parental responsibility.

Foster parents, step-parents and grandparents do not automatically have parental responsibility.

If the baby is a ward of court, all ‘important steps’ in the child’s life must first be approved by the court.

The Children Act allows a person who does not have parental responsibility for a child but who ‘has care’ to do what is reasonable in all the circumstances of the case for the purpose of safeguarding or promoting the child’s welfare. However, it would rarely be reasonable for those with care of a child to consent to treatment on the child’s behalf if a parent could be contacted instead.

For consent to be valid, the person with parental responsibility must be:

• Capable of taking that decision i.e competent, with the mental capacity to make the decision

• Acting voluntarily and not under pressure or duress from anyone

• Provided with enough information to enable them to make the decision

Slide 33: What information is available for parents?

The ‘Newborn Bloodspot Screening – Information for parents’ leaflet is available on the website in the following languages:

• Arabic

• Bengali

• Chinese

• Chinese Traditional

• Polish

Slide 34: When should parents receive information about newborn bloodspot screening?

It is appreciated that parents receive a large amount of information in pregnancy.

However, providing information about newborn bloodspot screening during pregnancy allows time for parents to process this information and it gives them more opportunity to discuss this.

It will be more difficult for parents to have the time to read the leaflet for the first time, and to discuss this, whilst they are recovering from the birth and experiencing the tiredness associated with a new baby.

Slide 35: When should this screening be discussed?

The parents should be informed about the newborn bloodspot screening in the antenatal period, and it should be ensured that they have a copy of the ‘Newborn Bloodspot Screening – Information for parents’ leaflet. The screening should be recommended during pregnancy.

Newborn bloodspot screening should be discussed again after birth, at least 24 hours before taking the sample. This is so that the parents have time to process the information and make an informed decision about the screening prior to the day of sample collection.

It should be ensured that the parents have a copy of the information leaflet following the birth.

Slide 36: Do parents have a choice?

Newborn bloodspot screening is strongly recommended but parents do have the right to choose.

To make an informed decision, the parents should have received written information and had the opportunity to discuss the screening with an appropriate health professional.

It is very important that the health professional ensures that the parents have a good understanding of the benefits of screening.

It is important to note that screening for the inherited metabolic disorders (IMDs) will be offered as one test, in addition to the tests for CHT, CF and SCD. This means that parents can only consent to screening for all six IMDs as it is not possible to test for only some of them.

Slide 37: What should happen when parents consent to the screening?

Parents will be requested verbally to give their consent for the newborn bloodspot screening. Where it is given, their consent will be recorded in the maternal notes, or other appropriate health record and in the Personal Child Health Record (red book).

A parental signature is not required for consent.

The procedure for newborn bloodspot screening is covered in the next presentation in this package ‘How to take a good quality bloodspot sample’ and in the ‘Guidance notes for all sample takers’ (NBSW) which can be found on the NBSW website: www.newbornbloodspotscreening.wales.nhs.uk

Information about what happens to the baby’s completed bloodspot card after the sample has been tested can be found on the next slide (Slide 46).

There is the possibility that in the future, parents will be contacted to invite them or their child to take part in research that has been agreed by the Screening Division of Public Health Wales. This would only be for research projects that have been approved by a Medical Research Ethics Committee.

Parents should be asked if they consent to being contacted in the future about the research. The parents are not being asked if they consent to the research itself. If they do not wish to be contacted in the future about research, the sample taker should tick the ‘no further research contact’ box on the bloodspot screening card.

Slide 38: What happens to the baby’s bloodspot screening card after screening?

Slide 39: What should happen if parents decline screening?

Slide 40: What should happen if parents decline screening?

It is very important to discuss the reasons for decline with the parents and ensure that they have received written information and have had the opportunity for discussion with an appropriate health professional.

If parents decline screening the bloodspot screening card should be completed in full and sent to the Wales Newborn Screening Laboratory.

This is so that the laboratory can issue a newborn bloodspot screening report stating ‘Decline’ for all or specific tests. If this doesn’t happen this baby would later be identified as having no evidence of bloodspot screening result and may require continued follow up by health professionals.

Although parents can decline for all or specific tests, it is important to note that screening for the inherited metabolic disorders (IMDs) will be offered as one test. This means that parents can only consent to screening for all six IMDs as it is not possible to test for only some of them.

Slide 41: Completing the bloodspot card if parents decline screening

It is important to emphasise that all the information fields on the bloodspot card should be completed accurately and in full.

Guidance for completing the bloodspot card can be found in the next presentation in this package ‘How to take a good quality bloodspot sample’ and in the ‘Guidance notes for completion of the newborn bloodspot screening card’ (NBSW) which can be found on the website: www.newbornbloodspotscreening.wales.nhs.uk.

The comments box should be used to record that the parents have declined all or specific tests, and the parents should be asked to provide a signature here confirming their decision to decline. The date of decline and completion of card should also be recorded here.

If the parents refuse to sign the card or if it is not possible to obtain a signature for any other reason, this should be documented on the bloodspot card and in the baby’s Personal Child Health Record and maternity notes or other relevant records. The card should still be sent to the laboratory even if it has not been signed by a parent.

The health professional who is responsible for confirming the parent’s decision to decline and for completing the information fields on the bloodspot card, should enter their name in the sample taker name box. They should also record their NMC number in the sample taker ID box on the card.

It should be emphasised that parents should not be asked to send the bloodspot card into the laboratory themselves. It is the responsibility of the health professional to send bloodspot screening samples or bloodspot cards stating decline to the Newborn Screening Laboratory.

Slide 42: What information should be given to parents if they decline screening?

Parents should be made aware that they can change their mind and decide to have their baby screened in the future, and that newborn bloodspot screening can be offered up to one year of age.

It should be emphasised that screening for cystic fibrosis can only be offered up to 8 weeks of age because the test becomes unreliable after this time.

The parents should be informed of which health professional they should contact if they later decide to have their baby screened, and should be given details of how to contact them.

Slide 43: How to take a good quality bloodspot sample

The photograph shows a good quality sample being taken.

A single large drop of blood is applied to one point in each circle on the card.

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Slide 44: Objectives

The aim is to enable sample takers to gain the knowledge and skills required so that they can consistently take good quality newborn bloodspot screening samples.

Good quality samples that have been taken at the right time and that arrive at the laboratory without delay, enable babies who are suspected of having any of the conditions to be referred promptly for diagnostic tests and treatment.

Slide 45: The importance of taking a good quality bloodspot sample

The conditions screened for require early identification to ensure that early treatment or management is in place for the baby in order to improve health and prevent severe disability or even death. Treatment for PKU should be started by day 17 of life to prevent disability.

The bloodspot sample therefore needs to be taken at the right time. The sample should be taken on day 5 of life (counting day of birth as day 0), but if this is not possible the sample should be taken between day 5 and day 8.

A good quality sample taken at this time and which is sent to the laboratory within 24 hours, will enable a baby suspected of having any of the conditions to be promptly referred for diagnostic tests.

Bloodspot samples that are insufficient, taken too early or that need repeating for any other reason will result in a delay in the referral of babies.

Slide 46: What is a good quality sample?

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Slide 47: The importance of complete and accurate information on the bloodspot card

It should be emphasised that all information requested on the bloodspot card is required by the laboratory. The information fields should be completed accurately in legible writing so that babies can be correctly identified and so that the results can be validated.

The card should be completed at the time of the sample collection because mistakes and omissions can occur if information is written on the cards before the visit/appointment.

If any of the information fields have been left blank or have been recorded inaccurately, there could be a delay in the processing of the card by the laboratory staff whilst they make enquiries for this information. A repeat sample may be requested in some cases. This may result in delays in the referral of babies.

The demographic information including the contact details for the mother and GP surgery (including GP telephone number), are essential for the prompt referral of babies who are suspected of having any of the conditions screened for. Babies who are suspected of having an inherited metabolic disorder (IMD) such as MCADD, MSUD or IVA should be referred to be seen by a clinician within 24 hours of the result, and so these details including a current parent telephone number are essential.

Slide 48: Items required for the test

Newborn Bloodspot Screening Wales (NBSW) distribute the information leaflets, bloodspot cards and envelopes to health professionals in Wales.

If further supplies are needed, requests can be made via email: [email protected]

If the NBSW prepaid envelopes are not available at the time that the test is due, a stamped (first class) addressed envelope must be used.

The baby’s NHS number must be recorded on the bloodspot card, and it should therefore be obtained in readiness for the sample collection. Any bloodspot card received in the laboratory without a valid NHS number for the baby will not be processed and a repeat sample will be requested.

Please ensure that the NHS number recorded on the card is the correct NHS number for the baby. Particular care should be taken when recording the NHS number for twin babies because mistakes are more likely to be made.

It is important that sample collection is not delayed due to the NHS number not being available. If the NHS number is not available prior to taking the sample, health professionals can contact their regional Newborn Screening Administration Failsafe team who will be able to provide it. Please see the notes for slide 66 for further information.

If the maternity record is not available because the mother or baby are no longer receiving midwifery care, other relevant health records should be used to record the test.

Slide 49: Items required for the test

It is important that sample takers use a incision device (lancet) that meets the criteria for newborn bloodspot screening and that they use the device according to the manufacturer’s instructions. This is so that the device is used safely by the sample taker.

The incision device must be automated, provide an incision depth ≤ 2.0mm and be age-appropriate.

It is very important to check the manufacturer’s literature before using the specific incision device to confirm that it is the correct size for the baby (for premature, term or older babies) and that it is suitable for collecting newborn bloodspot screening samples. These devices are designed to provide the sufficiently high flow of blood needed to obtain a good quality bloodspot sample.

There is some evidence that an arch-shaped incision device is more effective in providing a good quality sample, and that it is associated with a reduced number of heel punctures per sample and with a reduced need to repeat the sample. (1) There is also evidence that there is a reduction in the time taken to complete the sample, in the time that the baby cried and that there is less bruising when this type of incision device is used. (2)

Manual lancets must not be used.

Slide 50: Preparation for taking the bloodspot sample

The bloodspot card should be completed at the time of the sample collection by the health professional who has responsibility for ensuring that the parents have given informed consent for the screening.

Completing the card before the test is due should be avoided because this could result in errors or omissions on the card.

The information fields should be completed with consultation of the parents to ensure that all the information is accurate. The completed card should then be checked with the parents and any changes made before sending it to the laboratory.

Slide 51: Preparation for taking the bloodspot sample

Recording the baby’s NHS number is essential because it is the only unique identifier for the baby. In line with current UK standards, any sample received in the laboratory without the baby’s NHS number will not be processed, and a repeat sample will be requested.

Guidance has been distributed to health professionals caring for asylum seeker babies or those who have moved in from overseas who have not yet been issued with an NHS number.

Health professionals should check that the NHS number is available prior to the day of the test so that action can be taken to obtain it in readiness for the sample collection. This would avoid possible delays in sending the sample to the laboratory. It is important that sample collection is not delayed due to the NHS number not being available.

If the NHS number for the baby is not available prior to taking the sample, health professionals can now contact their regional Newborn Screening Administration Failsafe team who will be able to provide it.

Newborn Screening Administration Failsafe Team Telephone Numbers (office hours Mon – Fri)

South East Wales - Cardiff and Vale, Cwm Taf and Aneurin Bevan University Health Boards Tel - 029 2074 3568

South West Wales - Abertawe Bro Morgannwg and Hywel Dda University Health Boards and Powys Teaching Health Board Tel - 01656 754085

North Wales - Betsi Cadwaladr University Health Board Tel - 01978 727005

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Slide 52: Explanation of the information fields on the bloodspot card – 1

It is important to ensure that all information fields on the bloodspot card are completed accurately so that babies can be correctly identified and so that the screening card can be processed by the laboratory.

This is the first of 4 slides which provide explanations for the key information fields:

1. The baby’s NHS number is essential as it is the only unique identifier for the baby.

2. The baby’s surname is that by which the baby will be known. If due to local policy, the surname of the mother must be recorded here, the baby’s surname, if different, must be recorded in the comments box.

Recording the baby’s own surname on the bloodspot card is also important because this can avoid delays if health professionals need to contact the laboratory regarding a baby’s NBS sample in the future. Also, if a baby is suspected of having any of the conditions, their own surname will need to be used when they are referred to a clinician.

3. The baby’s forenames should be recorded if known. This field should be left blank if the parents have not yet decided on the name(s).

4. The baby’s date of birth is essential for correctly identifying the baby and to enable the card to be processed. The results cannot be validated without this because it would not be possible to confirm that the sample had been taken at the correct time. The date of birth is essential if babies require referral to a clinician.

5. The date of sample is also essential for the validation of the results. Without this it is not known if the sample was taken at the correct time or if there was a delay between sample collection and its arrival in the laboratory.

Slide 53: Explanation of the information fields on bloodspot card - 2

6. The gestational age of the baby is essential for a valid congenital hypothyroidism (CHT) result. If a baby is born before 32 weeks gestation the laboratory will request a second bloodspot sample (preterm CHT) to be taken at 28 days of age (counting day of birth as day 0), or on day of discharge home, whichever is the sooner. If the baby is discharged before day 28 it is essential that this is recorded on the bloodspot card. If not, a repeat sample will be requested by the laboratory. Further information about the Preterm CHT policy can be found on the NBSW website.

7. The rank of the baby identifies the birth order. For example:

Singleton baby - 1 / 1 Twin 1 - 1 / 2 Twin 2 - 2 / 2 Triplet 1 - 1 / 3

This information is needed to inform the laboratory of whether the baby is a singleton or one of a multiple birth. This is important because if there is an abnormal screening result for a baby and it is identified as being one of twins, for example, the laboratory would then scrutinize the screening results of the other twin. Guidance for recording the rank can be found on the back of the bloodspot card.

8. Birthweight is important because it can aid interpretation of the results.

9. GP name, address, telephone number and postcode are all essential for the follow up of babies if they are suspected of having any of the conditions. It should be emphasised that the GP telephone number is essential as it is required when babies are referred for clinical care.

10. The current parent telephone number is essential to enable prompt referral of babies who are suspected of having any of the conditions.

Babies who are suspected of having an inherited metabolic disorder (IMD) such as MCADD, MSUD or IVA should be referred to be seen by a clinician within 24 hours of the result. The parents therefore need to be contactable by phone within this time frame. The parents should be asked what telephone number they would like recorded on the card.

Slide 54: Explanation of the information fields on bloodspot card - 3

11. It is very important to record if this is a repeat sample so that the laboratory can immediately identify this. The reason for repeating the sample should be recorded in

the comments box.

The previous sample is kept separately in the laboratory and is matched up with the repeat sample. A report is then issued following the completion of screening. It is important to note that the routine day 5 bloodspot screening sample is not a repeat sample just because a pre-transfusion sample has been taken from a baby in the neonatal unit, and so should not be marked on the card as such.

12. The laboratory needs to know if the baby has received a blood transfusion (any

type of transfusion) either intrauterine or after birth, and if so, the date of the last (most recent) transfusion. If a baby has had a blood transfusion in the 72 hours prior to the bloodspot sample being taken, the sample (4 spots) for CHT, CF and the IMDs would need to be repeated once 72 hours have passed without a blood transfusion. This

would enable metabolite concentrations to return to pre-transfusion levels before screening.

No further repeats would be required unless requested by the laboratory. Please refer to slide 31 for information about the pre-transfusion samples taken on neonatal units.

13. It is important to know if the baby is in hospital, and if so, the name of the

hospital and ward or department. This is so that the baby can be located promptly and can

be referred without delay if suspected of having any of the conditions.

This information is also essential to avoid delays in repeating any samples requested by

the laboratory.

Slide 55: Explanation of the information fields on bloodspot card - 4

15. It is the health board providing care at the time of the test that is recorded on the card. This is essential because it can help identify the location of babies who are temporarily staying/living outside their normal area, or who are inpatients in units elsewhere in Wales (where the hospital has not been recorded on the card). It also enables any feedback to be directed to the relevant health board.

If a baby is temporarily staying/living outside their usual home address when the sample is taken, the sample taker must record in the comments box details of their local maternity unit (which normally receives requests for repeat samples in the area) so that they can be contacted in the event of any queries or a request for repeat sample.

It is also essential that there is current contact telephone number for the parents recorded on the card so that they can be contacted if the baby needs to be referred.

16. The sample taker is the health professional who takes responsibility for ensuring that: • the parents have given informed consent for the screening • the bloodspot card has been accurately completed • the bloodspot sample is of good quality.

The sample taker should print their name and record their sample taker ID on the card. The NMC number is to be used as this unique identifier. Those sample takers who do not have an NMC number will be issued with a unique identifier by NBSW after they have completed and returned a Sample Taker Registration form. These forms can be accessed from the NBSW website.

Newborn bloodspot Screening Wales (NBSW) is establishing a database of all newborn bloodspot screening sample takers in Wales as part of its quality assurance processes. The database will be used as a mechanism to distribute information to sample takers and to monitor the quality of the newborn bloodspot screening programme.

Slide 56: How to take a good quality sample

Emphasise the importance of providing comfort measures for the baby. Cuddling, swaddling and skin to skin contact can help reduce the pain/discomfort experienced by babies during heel prick procedures.(3,4) Face-to-face contact, voice and touch may also help.

Breastfeeding can have an analgesic effect during heel puncture procedures and is therefore recommended. (5-7) An alternative is to offer breast milk or non-nutritive sucking (e.g. a pacifier) or sucrose solutions. (6-8) These alternatives to breastfeeds should be offered according to local policy and the UNICEF UK’s Baby Friendly Initiative standards. (9) Parents of babies who are formula fed may wish to give a comfort bottle feed during the procedure.

Recommend that the baby, if possible, is cuddled in a secure position to help him or her cope with the procedure. Swaddling and holding the baby in an upright position has been found to reduce the pain/discomfort experienced during heel prick procedures.(3) This position also allows the feet to hang down to maximise blood flow.

Ensuring the baby is warm and comfortable is essential in order to obtain a good quality bloodspot sample. Unwrapping babies for bathing or weighing may be more appropriate after the heel puncture so that the baby keeps warm prior to the procedure.

Additional warming of the foot is not required and should be avoided because of the risk of burns and scolds. The NHS Newborn Blood Spot Screening Programme has received reports of babies being scalded/burned. (10, 11) There is no evidence that warming the foot aids blood flow. (12)

Cleansing the baby’s heel helps avoid contamination of the sample. Faecal matter contains high concentrations of immunoreactive trypsinogen (IRT) which is measured during screening for cystic fibrosis. Faecal contamination may therefore lead to a false-positive result for CF.

Alcohol wipes must not be used to clean the heel because they can cause burns and blisters. (13)

Slide 57: Skin puncture sites for full-term and preterm infants

The external and internal limits of the calcaneous are the preferred puncture sites because the skin to calcaneous depth is greater in these areas.

NHS Newborn Blood Spot Screening Programme

Adapted from Jain and Rutter (1999) (14)

Slide 58: How to take a good quality sample

It is important to wait for the flow of blood because the formation of a hanging drop of blood from the puncture site may not be immediate. The foot can be gently massaged if required – gentle milking action to encourage the blood flow. The heel should not be rubbed or squeezed because this could lead to pain or bruising.

Apply a single large drop of blood to the centre of each circle on the card, and give it adequate time to fill the circle and soak through to the back of the card. Only the drop of blood should touch the card.

The blood must only be applied to the front of the card. Do not apply blood to the back of the card because this results in an inconsistent density bloodspot which could give inaccurate results.

The density of blood throughout the bloodspot needs to be consistent for an accurate result. Multiple applications results in variations in the density of blood which could affect the results or may make the sample insufficient for testing.

If the heel or the card are moved around in an attempt to ‘fill’ the circle by spreading the blood over the surface of the card, the blood is unlikely to soak through to the back of the card and results in an insufficient sample.

Another reason for blood not soaking through to the back of the card would be if the drop of blood is ‘squashed’ between the card and the heel. This would result in blood quickly being spread sideways on the front surface of the card but not having time to soak through to the back of the card.

If a plaster is required, a hypoallergenic one should be used.

The incision device should be disposed of in a sharps container.

Slide 59: Good quality bloodspot sample

This photograph shows an example of a good quality bloodspot sample as seen from the front and the back of the card.

Each bloodspot is made up of a single drop of blood which has been allowed to soak evenly through to the back of the card.

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Slide 60: What should be done if the flow of blood stops?

Wiping away the congealed blood encourages blood flow due to the disturbance of the clot.

The foot should be gently massaged to encourage the blood flow. Rubbing or squeezing should be avoided in order to minimize pain and bruising.

It is important to apply the blood to a new circle so that the bloodspot consists of a single drop of blood.

If the drop of blood is applied to a circle where blood has already been applied, the bloodspot will be multilayered with irregularities of the density of the blood through the card which can cause inaccurate results.

Slide 61: Once bloodspots have dried

Bloodspot screening cards and envelopes (glassine and NBSW prepaid envelopes) are distributed by NBSW to key areas within the health boards.

Requests for these supplies or any queries about the distribution of the cards and envelopes should be sent to [email protected]

Slide 62: After taking the bloodspot sample

The bloodspot sample should be sent to the Newborn Screening Laboratory on the same day, but if not possible, within 24 hours so that babies suspected of having any of the conditions can be referred to a clinician without delay.

One card only should be sent per envelope so that each sample can be sent promptly to the laboratory. Do not batch samples before despatch because it can delay them reaching the laboratory.

If the prepaid envelope is not available at the time of the test, the sample should be sent by first class post to -

Dr Stuart Moat, Newborn Screening Laboratory, Department of Medical Biochemistry, University Hospital of Wales, Heath park, Cardiff, CF14 4XW.

Despatch details should be recorded for audit purposes and so that the health professional can confirm later that the sample has been sent to the laboratory.

It is very important to ensure that there are clear records notifying the screening status of a baby on discharge home or on transfer to another unit. This is so that the health professionals taking over the care are alerted if there is a need to offer NBS.

Parents should be made aware that they should contact their health visitor if they have not received the results within 6-8 weeks.

Slide 63: Laboratory requests for further newborn bloodspot screening samples

Slide 64: Objectives

Slide 65: Why are further samples requested?

Slide 66: Avoidable repeat samples

Bloodspot cards that have small bloodspots will be rejected as there is a risk that the results will be incorrect and a baby with a condition may be missed.

Slide 67: Avoidable repeat samples

Slide 68: Avoidable repeat samples

It is important to note that bloodspots should never be compressed because there is a significant risk that the results will be falsely decreased and therefore a baby with a condition may be missed.

Recording the baby’s NHS number is essential because it is the only unique identifier for the baby. Any sample received in the laboratory without the baby’s NHS number will not be processed, and a repeat sample will be requested.

Care should be taken to ensure that the NHS number recorded on the card is correct and legible. Particular care should be taken when recording the NHS number for babies who are twins because there is a higher risk of error.

It is important that sample collection is not delayed due to the NHS number not being available. If the NHS number for the baby is not available prior to taking the sample, health professionals can now contact their regional Newborn Screening Administration Failsafe team who will be able to provide it.

Newborn Screening Administration Failsafe Team Telephone (office hours Mon – Fri)

South East Wales - Cardiff and Vale, Cwm Taf and Aneurin Bevan University Health Boards Tel - 029 2074 3568

South West Wales - Abertawe Bro Morgannwg and Hywel Dda University Health Boards and Powys Teaching Health Board Tel - 01656 754085

North Wales - Betsi Cadwaladr University Health Board Tel - 01978 727005 It is very important that sample takers check that all the information fields are completed accurately before sending the card to the laboratory. The sample should be sent the same day or within 24 hours of collection using the NBSW prepaid envelope (or by first class post if prepaid envelope not available) so that it arrives in the laboratory within an acceptable time-frame.

Slide 69: Avoidable repeat samples

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Slide 70: Poor quality bloodspot samples

Insufficient:

Insufficient samples are those where the volume of blood in the bloodspots is small or where blood has not soaked through to the back of the card.

Bloodspots made up of a small volume of blood will be rejected as there is a risk that the results will be incorrect and a baby with a condition may be missed.

Layering:

Layering of blood can cause inaccurate results due to the increased density of blood in the sample.

Contaminated:

It is important to ensure that the heel is cleaned thoroughly prior to sample collection to avoid contamination.

Compressed:

It is important to note that bloodspots should never be compressed because there is a significant risk that the results will be falsely decreased and therefore a baby with a condition may be missed.

It should also be emphasised that blood must not be applied to the back of the bloodspot card. This provides a poor quality sample which can cause inaccurate results.

Slide 71: Avoidable repeat samples

Slide 72: Example 1 – Insufficient sample

This sample is insufficient. Although the blood has soaked through to the back of the card, the volume of blood in the bloodspots is too small for testing.

To obtain accurate results the circles need to be filled.

The size of the punches that are taken for analysis of the sample can be seen.

The punches need to contain bloodspot that is made up of a sufficient volume of evenly saturated blood.

Slide 73: Example 2 – Insufficient sample

This sample is insufficient. The blood has soaked through to the back of the card but the volume of blood in the bloodspots is too small.

Cards that have small bloodspots will be rejected as there is a risk that the results will be falsely low and a baby with a condition may be missed.

Slide 74: Example 3 – Insufficient sample

This sample is insufficient because the blood has not soaked through to the back of the card.

Slide 75: Example 4 – Insufficient sample

This sample taker appeared to have obtained a large volume of blood from the heel puncture, but the blood was incorrectly applied to the card. Consequently, this sample was insufficient and required repeating.

This would have been a good quality sample if the blood had been applied as a single drop touching one point in the circle and having time to soak evenly through to the back of the card.

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Slide 76: Example 5 – Insufficient sample

This sample is both poor quality and insufficient for testing.

As can be seen, there are multiple applications and the blood has not soaked through to the back of the card.

Multiple small spots have been used to make a larger spot and this is unacceptable for testing.

The bloodspots in a good quality sample should appear the same size and shape when seen from the front and the back of the card. This can only occur when each bloodspot is made up of a single drop of blood.

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Slide 77: Example 6 – Poor quality/Insufficient sample

This poor quality sample is insufficient and is clearly made up of multiple applications.

Slide 78: Example 7 – Insufficient sample

This shows another insufficient sample.

Slide 79: Example 8 – Example 8 – Insufficient sample

This sample is insufficient for testing.

Slide 80: Example 9 – Poor quality/Insufficient sample

This poor quality sample is made up of multiple applications and shows clear signs that blood has been applied to the back of the card.

The volume of blood in this sample is insufficient for testing.

Slide 81: Good quality bloodspot sample

The bloodspots are the same size and shape as seen from both sides of the card.

Each bloodspot is made up of a single drop of blood.

The density of the blood is consistent throughout the bloodspot which is important for obtaining accurate results.

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Slide 82: Additional samples requested for clinical reasons

All babies born at less than 32 weeks gestation (less than or equal to 31+6 days) should be offered a second preterm CHT test at 28 days of age (counting day of birth as day 0) or on day of discharge whichever is the sooner.

This is required because the routine bloodspot screening result can be incorrectly negative because of the baby’s prematurity. These babies will be under the care of the in-patient neonatal or paediatric services when the second CHT sample is due at 28 days of age. If babies are discharged home prior to 28 days of age they should have the sample taken on the day of discharge, before they go home. This must be documented on the card otherwise a repeat will be requested.

The day of birth must be counted as day 0 when calculating the correct time to take the sample to ensure that it is not taken too early. Any samples taken on day 27 or earlier (unless baby has been discharged home) will not be accepted and a repeat sample will be requested.

Two bloodspots (two circles filled and evenly saturated) are required on the screening card for the second preterm CHT sample. ‘CHT preterm’ should be recorded on the card to ensure the laboratory is aware of the reason for the second sample.

If a baby has had a blood transfusion in the 72 hours prior to the initial bloodspot sample being taken, the sample (4 spots) for CHT, CF, and the IMDs would need to be repeated once 72 hours have passed without a blood transfusion. This would be to enable metabolite concentrations to return to pre-transfusion levels. No further repeats would be required unless requested by the laboratory.

In the event of multiple blood transfusions, the initial bloodspot sample should be taken by day 8 at the latest. This is to ensure that all babies are screened by day 8 regardless of transfusion status.

An additional bloodspot sample (pre-transfusion sample) should be taken from every baby admitted to a neonatal unit in Wales. This is required because transfused blood interferes with the interpretation of sickle cell disorder (SCD) screening results. The pre-transfusion sample will be used to screen for SCD if the baby had a blood transfusion between admission and day 5 of life, when the routine bloodspot sample is taken.

Slide 83: Additional samples requested for clinical reasons

Slide 84: What should happen when a repeat or additional sample is requested?

It should be emphasised that all samples requested by the laboratory should be taken within 3 calendar days (72 hours) of the request. This is to avoid delays in referring babies suspected of having any of the conditions.

Babies who are temporarily staying at an address outside the area they live will be difficult to locate if the relevant information hasn’t been recorded on the bloodspot card. Sample takers should be made aware of the importance of indicating which maternity unit should be contacted in the event of laboratory requests for repeat samples or further information.

It is also important to ensure that the health board providing care at the time of the sample collection is recorded on the bloodspot card. This helps identify the location of in-patient babies when the name of the hospital hasn’t been recorded on the card.

Slide 85: Laboratory requests for further information

Slide 86: Further information

The Newborn Bloodspot Screening (NBSW) website has been developed for use by the public and health professionals. It includes information about the conditions screened for, frequently asked questions and developments in newborn bloodspot screening in Wales. There are also training resources for health professionals on this website.

NBSW bulletins provide information and updates on Newborn Bloodspot Screening in Wales.

Newborn Screening Administration Failsafe Team Telephone Numbers (office hours Mon–Fri)

The teams can be contacted by health professionals who have queries about the follow up of babies including those identified by the NBSWS failsafe. They can also be contacted to request the NHS number for a baby if it is not available prior to taking the sample.

South East Wales - Cardiff and Vale, Cwm Taf and Aneurin Bevan University Health Boards Tel - 029 2074 3568

South West Wales - Abertawe Bro Morgannwg and Hywel Dda University Health Boards and Powys Teaching Health Board Tel - 01656 754085

North Wales - Betsi Cadwaladr University Health Board Tel - 01978 727005

Clinical queries - For all clinical enquiries (including interpretation of screening results/family history queries) or enquiries about the quality of a bloodspot sample please contact:

Roanna George, Principal Clinical Scientist: Telephone – 029 2074 3561 Email: [email protected], or Dr Stuart Moat (Consultant Clinical Biochemist), Director of Wales Newborn Screening Laboratory: Telephone – 029 2074 3562 Email: [email protected]

Wales Newborn Screening Laboratory telephone – 029 2074 4032 Laboratory Fax number – 029 2074 4065

Slide 87: Newborn bloodspot screening scenarios

Slide 88: Newborn bloodspot screening scenarios – Scenario 1

The Newborn bloodspot screening (NBS) test should be discussed with the parents to find out if the sample was taken, and where the family were living at the time of the test. The health visiting notes and personal child health record (red book) for the baby should be checked for evidence of a UK newborn bloodspot screening result.

It is important to ensure that there is evidence of NBS result or decline even if parents say that their baby has had screening and that they have been told the result. The parents may have remembered their baby having blood taken from the heel but this may have been for another reason.

There may be evidence of the sample being taken, but this does not confirm that the sample reached the laboratory or that it was tested.

If there isn’t any evidence of the NBS result or decline in the records, the Regional Newborn Screening Administration Failsafe teams should be contacted (office hours Monday – Friday) so that:

• Checks can be made on the Newborn Bloodspot Screening Wales System (NBSWS)

• Checks can be made to find out if there is a result for this baby with the Newborn Screening Laboratory in Birmingham (or relevant UK newborn screening lab if living elsewhere in the UK at the time). If so, the laboratory would then be able to issue a report stating the result.

If there is no evidence of UK NBS screening, the baby is eligible and should be offered this screening up to the age of one year. Screening for cystic fibrosis cannot be offered because it can only be offered to babies under 8 weeks of age because the test becomes unreliable after this time.

Slide 89: Newborn bloodspot screening scenarios – Scenario 2

This baby is eligible to be offered NBS even if screening tests have been undertaken in Japan.

As this baby is over 8 weeks of age, cystic fibrosis cannot be offered because the test is not reliable after 8 weeks of age.

If parents decline the screening, the information fields on a newborn bloodspot screening card should be completed in full. The date should be written on the card (in the comments box) and the name of the health professional who has taken responsibility for discussing the screening and completing the information fields should be recorded in the sample taker name box. They should also record their sample taker ID on the card.

Guidance for the action required if parents decline screening can be found in the next presentation in this package ‘Gaining informed consent for newborn bloodspot screening’ and in the ‘Guidance notes for all sample takers’ (NBSW) which can be found on the NBSW website: www.newbornbloodspotscreening.wales.nhs.uk

Sample taker ID:

This is the health professional’s NMC number which should be recorded in the Sample taker ID box on the card.

Those health professionals who do not have an NMC number will be issued with a unique identifier by NBSW after they have completed and returned a sample taker registration form. These forms can be found on the NBSW website.

Slide 90: Newborn bloodspot screening scenarios – Scenario 3

It is important to check that the parents have received the written information about the screening and have had the opportunity to discuss this with an appropriate health professional. There is also a need to confirm that they understand the benefits of newborn bloodspot screening.

The reasons for the parents’ decision to decline should be explored so that appropriate information can be given to them.

Once the parents have confirmed their decision to decline screening, this should be documented in the baby’s Personal child health record (red book) and in the maternity notes and/or other appropriate record.

The health professional should then complete all the information fields on the newborn bloodspot screening card and record the parents decision to decline screening in the comments box on the card. A parental signature on the card should be requested to confirm their decision to decline screening. The card should then be sent to the Newborn Screening Laboratory in the NBSW prepaid envelope.

Parents should be provided with contact details in case they change their mind and decide to have their baby screened in the future. The parents should be informed that if they do change their mind, that babies are eligible for this screening up to one year of age. They should also be informed that screening for cystic fibrosis can only be offered for babies up to 8 weeks of age because the test becomes unreliable after this time.

The health visitor and GP should be informed that parents have declined the screening.

Slide 91: Newborn bloodspot screening scenarios – Scenario 4

The parents should be given a copy of the ‘Newborn Bloodspot Screening – Information for parents’ leaflet even if they had received a copy in pregnancy or at the time of birth. This is to ensure that the written information they receive is current and includes any changes in the screening.

The information should be discussed with the parents and time should be given to answer any questions they may have. The decision to consent to screening should be recorded in the baby’s Personal child Health Record and in the health visitor notes.

It is very important to inform the parents that screening for cystic fibrosis cannot be offered for their baby. It should be explained that screening for cystic fibrosis can only be offered up to 8 weeks of age because the test becomes unreliable after this time.

The sample taker should record the reason for the sample being taken at 6 months of age in the comments box on the bloodspot card so that the laboratory is informed of this.

When the bloodspot screening results are received, it should be ensured that the GP is made aware that the baby has now had the screening. This is important because the GP would have been informed of the parents decision to decline screening at 5-8 days of age.

Slide 92: Newborn bloodspot screening scenarios – Scenario 5

It is important to ensure that there is not a delay in taking the sample whilst decisions are being made regarding who takes parental responsibility for giving consent for the newborn bloodspot screening.

The action taken would be according to the individual circumstances.

All decisions regarding newborn bloodspot screening should be clearly documented in the maternity and other relevant records.

It should be ensured that the person with parental responsibility has been given all the relevant information about the newborn bloodspot screening, and has had the opportunity for discussion with an appropriate health professional.

Slide 93: Newborn bloodspot screening scenarios – Scenario 6

In this case, the father’s name should be recorded on the bloodspot screening card because it is the surname by which the baby will be known.

This is the name that will be used if the baby is referred to be seen by a clinician if any of the conditions are suspected.

It is also the surname that will be used if health professionals need to contact the laboratory regarding a baby’s newborn bloodspot screening sample in the future.

In some units, the local policy states that the mother’s surname should be used when recording the baby’s surname on the bloodspot card. If so, the surname by which the baby will be known should be recorded in the comments box.

Slide 94: Newborn bloodspot screening scenarios – Scenario 7

Although the student takes the bloodspot sample after gaining consent from the mother, the midwifery mentor would take the responsibility for ensuring that:

• the parents have given informed consent for the screening

• the bloodspot card has been accurately completed

• the bloodspot sample is of good quality.

The midwifery mentor would therefore record their name as the sample taker on the card and would record their NMC number in the Sample Taker ID box.

The student would print their name and record that they have taken the sample in the comments box on the card.

In the same way, if a doctor on a neonatal unit took a sample from a baby for newborn bloodspot screening, their name would be recorded in the comments box. The nurse caring for the baby at the time of the sample collection would complete the bloodspot card because they would take responsibility for ensuring that informed consent had been given.

Slide 95: Newborn bloodspot screening scenarios – Scenario 8

If the baby’s feet are cool to the touch it is unlikely that a good bloodspot sample will be obtained and so this shouldn’t be attempted at this time.

The aim would be to ensure that the baby is warm and comfortable prior to the test. Additional warming of the foot is not required and should be avoided.

If the baby’s feet are cool to the touch, wrapping the baby and having him or her cuddled by a parent before the procedure may be helpful.

Slide 96: Newborn bloodspot screening scenarios – Scenario 9

The most important factor in the collection of a good quality sample is the technique of applying the blood to the card.

A large drop of blood might not soak through to the back of the card for the following reasons:

• the drop may not have been applied to a single point in the centre of the circle – it may have been applied to several different areas in an attempt to ‘fill’ the circle

• the drop may have been squashed between the card and the heel preventing it having the time to soak through to the back of the card. The blood would have spread sideways at the expense of passing through to the back of the card.

To ensure the blood soaks through to the back of the card, the sample taker must:

• wait for a large hanging drop of blood to form at the puncture site

• apply the drop of blood to the centre of a circle (at one point only) and keep it still as it gradually soaks through to the back of the card

• avoid pressing the card against the heel

Slide 97: Newborn bloodspot screening scenarios – Scenario 10

Recording the baby’s NHS number on the bloodspot card is essential – it is the only unique identifier for the baby.

It is important that bloodspot screening is not delayed due to the baby’s NHS number not being available in the records.

The regional Newborn Screening Administration Failsafe team should be contacted to request the NHS number for this baby. As the baby is day 5, the NHS number will have been generated and so the team should be able to access this.

It would be good practice for health professionals to ensure that they have the NHS number for babies prior to the sample collection.