Document Control - Northern Devon Healthcare NHS Trust · 2019. 4. 27. · Maple Syrup Urine Disease, Isovaleric Acidaemia (IVA) Glutaric Aciduria type 1 (GA1) Homocystinuria 1.2.

Newborn Bloodspot Sample Screening Guideline FINAL 05.03.18

Maternity Page 1 of 18

Document Control

Title

Newborn Bloodspot Sample Screening Guideline

Author

Author’s job title Antenatal & Newborn Screening Co-ordinartor

Directorate Women & Children

Department Maternity

Version Date

Issued Status Comment / Changes / Approval

0.1 Feb 2015

Draft First Draft of new Guidelines/Reviewed into new trust format

1.0 Feb 2015

Final Approved by Maternity Services Guideline Group on 11.02.15

1.1 Mar 2018

Revision Minor amendments to comply with National screening Committee standards and transferred to new template.

2.0 Mar 2018

Final Approved and published on BOB

Main Contact Antenatal and Newborn Screening Coordinator Ladywell Unit North Devon District Hospital Raleigh Park Barnstaple, EX31 4JB

Tel: Direct Dial – 01271 314037 Tel: Internal – 4037

Lead Director Medical Director

Superseded Documents None

Issue Date March 2018

Review Date March 2021

Review Cycle Three years

Consulted with the following stakeholders:

Midwives Nurses Paediatricians

Approval and Review Process

Maternity Guideline Group

Local Archive Reference G:\Corporate Governance\Compliance\Published Database\Maternity Local Path Maternity\folder Filename Newborn Bloodspot Sample Screening Guideline v2.0

Policy categories for Trust’s internal website (Bob) Maternity / Midwifery / Special Care Baby Unit

Tags for Trust’s internal website (Bob) Newborn, Bloodspot, Sampling


Corporate Governance G:\Corporate Governance\Compliance Team\Policies Procedural Documents\Published Policy Database\Maternity\newborn bloodspot screening guideline\Newborn Bloodspot Sample Screening Guideline v2.0.docx V1.0 10Jul15 Page 2 of 18

CONTENTS

Document Control........................................................................................................................ 1

1. Purpose ................................................................................................................................ 2

2. Equipment Required ............................................................................................................. 3

3. Preparation for taking the bloodspot sample ......................................................................... 3

4. Performing the Blood Spot Sample ........................................................................................ 4

If the blood flow ceases: ................................................................................................................. 6

If a second puncture is required: .................................................................................................... 6

5. After taking the Newborn Bloodspot sample ......................................................................... 6

Results to parents ........................................................................................................................... 6

6. Samples SCBU/ postnatal inpatients, Pre-term or babies who have received multiple ............ 6

Blood transfusion ............................................................................................................................ 7

Pre-term Infants .............................................................................................................................. 7

7. Repeat Samples .................................................................................................................... 7

8. Babies who move into area before 1 year of age ................................................................... 8

9. Failsafe ................................................................................................................................. 8

10. Training ................................................................................................................................ 8

11. Contact Numbers .................................................................................................................. 9

12. Monitoring Compliance with and the Effectiveness of the Guideline ...................................... 9

Standards/ Key Performance Indicators ......................................................................................... 9

Process for Implementation and Monitoring Compliance and Effectiveness ................................ 9

13. References ........................................................................................................................... 9

14. Associated Documentation ................................................................................................. 10

Appendix 1: Newborn Bloodspot Screening Tests ........................................................................ 11

Appendix 2: DECLINE OF NEWBORN BLOOD SPOT SCREENING .................................................... 15

Appendix 3: DECLINE OF NEWBORN BLOOD SPOT SCREENING .................................................... 17

1. Purpose

1.1. The purpose of this document is to detail the process and best practice for Newborn Bloodspot Screening. Screening identifies rare but serious conditions in babies, with the aims for early detection, referral and treatment. The UK National Screening Committee (UK NSC) recommends all babies are offered screening for (Appendix 1);

Phenylketonuria (PKU)

Congenital hypothyroidism (CHT)

Sickle cell disease (SCD)

Cystic fibrosis (CF)

Medium-chain acyl-coA dehydrogenase deficiency (MCADD)

Maple Syrup Urine Disease, Isovaleric Acidaemia (IVA)

Glutaric Aciduria type 1 (GA1)

Homocystinuria

1.2. The blood spot sample should be taken on day 5, or in exceptional Circumstances between days 5-8, with day 0 being the day of birth.



1.3. The policy applies to Midwives, Nurses and Paediatricians.

1.4. Implementation of this policy will ensure that:

Provide a service for newborn blood spot screening, in line with the recommendations and standards of the UK National Screening Committee (UKNSC).

Support midwives and nurses to obtain informed consent with a thorough

understanding on the procedure & tests offered

Encourage parents on the uptake of screening based on current evidence based information

Achieve early detection, referral and treatment for those thought to be affected

Educate on how to obtain and good valid sample

Reduce pain during the procedure

2. Equipment Required

Equipment Required UK NSC booklet ‘screening tests for you and your baby’ (parents should have a copy at least 24 hours pre-test)

Baby’s barcode identification labels

Blood spot card (ensure expiry date) and glassine envelope

Postnatal notes & personal child health record (PCHR)

Tepid water for cleaning foot

Protective gloves

Automated incision device designed for use on newborns

Sharps box

Cotton wool/ gauze

Hypoallergenic spot plaster (if required)

Prepaid 1st Class envelope

3. Preparation for taking the bloodspot sample

Ensure parents have a copy of ‘screening tests for you and your baby’ at least 24 hours prior to screening, in the appropriate language, available in 12 languages, from;



https://www.gov.uk/government/publications/screening-tests-for-you-and-your-baby-description-in-brief

Gain verbal informed consent from the parent, discuss the procedure and document, consent.

The parents should be made aware that the blood spot card will be stored for at least 5 years and maybe used to check the results or for other tests recommended by the baby’s doctor; to improve the screening programme or for research to help improve the health of babies and their families.

Parents should be asked if they wish to be contacted regarding research linked to the screening programme. If declined, write ‘no research contact’ on the blood spot card.

If parents decline screening, record declined (for all or each separate condition declined) in postnatal notes, PCHR and on blood spot card. The Bloodspot card should then be sent to the laboratory.

Inform the Antenatal & Newborn Screening Coordinator/deputy of declined screening who will write to the parents Appendix 2 and inform the GP and health visitor using the letter template in Appendix 3

4. Performing the Blood Spot Sample

Check expiry on card

When completing the blood spot card care must be taken to place card on a clean surface to avoid contamination.

Complete details of card at time of sample.

Use a baby identification bar code label, on each sheet of the bloodspot card.

Check details on the bar code label with parent for accuracy.

If the baby’s bar code identification label is un-available use the baby’s details including NHS number from the electronic patient records birth notification. Check details for accuracy with parent.

Record the following in the comments box, if appropriate:

1. Baby’s known medical history 2. Relevant family history e.g. PKU, CF, etc 3. Mother’s carrier status for Sickle Cell Disease. 4. Reasons for sample if not taken on day 5-8 5. Hospital code: RBZ





Suggest comfort measures for baby. Ensure the baby is cuddled an in a secure position. Engaging the baby through face-to-face contact, voice and touch may be beneficial.

Suggest the baby is breast feeding during the procedure as an analgesic. If formula feeding, although there is no evidence to suggest works with analgesic properties, it may help as a form of comforting the baby.

Clean the heel with tepid water. DO NOT USE ALCOHOL WIPES. Allow to completely dry.

Soft paraffin solutions should not be used when obtaining a newborn bloodspot sample.

Wash hands and apply gloves.

Obtain sample using an automated incision device designed for newborns. For full term and pre-term infants, the external and internal limits of the calcaneus are the preferred puncture sites (see diagram A). Skin puncture must be no deeper than 2.0mm.

Diagram A

Allow the heel to hang down to assist the blood flow and place the device against

the heel in accordance with manufacturers’ instruction.

Wait for the blood to flow. Allow one spot of blood to drop onto each circle on a card. Do not allow the heel to make contact with the card. Do not squeeze the foot to increase blood flow.



Fill each circle- do not layer the blood. Do not compress the blood onto the card- applying pressure can reduce the density of blood and can lead to a ‘suspected’ result being missed.

Check the back of the sample card to make sure the blood has soaked completely through.

If the blood flow ceases:

4.1. The congealed blood should be wiped away firmly with cotton wool. Gently ‘massage’ foot, avoid squeezing.

If a second puncture is required:

4.2. This should be performed on a different part of the foot or on the other foot. When sample is complete wipe excess blood and apply gentle pressure. Apply a hypoallergenic plaster if required.

5. After taking the Newborn Bloodspot sample

5.1. Allow the sample to air dry away from direct sunlight or heat, then place in glassine envelope. Dispatch sample within 24hrs of taking. The laboratory needs to receive the sample within 3 working days.

5.2. Document in notes the date, card serial number and location of dispatch (e.g.- maternity reception, medical centre, post code of post box (visible on each box) and PCHR ‘red book’. Advise parents to contact their health visitor if results are not received within 6-8 weeks.

Results to parents

5.3. If no condition suspected, the parents will receive a letter from Child Health Records Department (CHRD), this will be checked by their Health Visitor at the baby’s 6-8-week check. The letter will recommend parents keep this result in the Personal Child Health Records (PCHR).

5.4. If a condition is suspected, parents will be contacted by their GP or Health visitor.

6. Samples SCBU/ postnatal inpatients, Pre-term or babies who have received multiple

6.1. SCBU/ postnatal inpatients, Pre-term or babies who have received multiple samples

6.2. Blood spot screening should be coordinated with other tests where possible.

6.3. Venepuncture or venous/ arterial sampling from an existing line is an alternative, so long as it is not contaminated with EDTA and the line is cleared of infusate.

6.4. Do not use heparinised capillary tubes to obtain the blood spot sample.



Blood transfusion

6.5. Babies less than 5 days of age should have a single circle blood spot sample taken on admission/prior to blood transfusion to screen for Sickle Cell Disease. It should be marked ‘pre-transfusion’.

6.6. The pre-transfusion card should be stored with the baby’s medical record (in line with local protocols) and despatched to the newborn screening lab with the routine day 5 sample if the baby has received a blood transfusion in the interim.

6.7. If before the routine day 5 sample is taken, a baby has had a transfusion, either intrauterine or in the newborn period, another 4 spot sample is needed 72 hours after the last transfusion.

Pre-term Infants

6.8. Babies born at less than 32 weeks (equal to or less than 31 + 6) should be offered a second blood spot sample to be taken in addition to the day 5 sample. There are to be tested when they reach 28 days or day of discharge home, whichever is sooner.

6.9. Document on card ‘CHT preterm’, and write gestational age, in weeks and days. Two spots on the card should be filled.

6.10. Document in Neonatal records and Personal Child Health Records (PCHR).

7. Repeat Samples

Informed consent must be gained from parents for all repeat bloodspot samples and documented in the baby’s notes and child health record (red book)

Parents should be informed of the reason for the repeat.

If a repeat sample is requested for borderline TSH results, a one-week interval is recommended between samples.

A repeat requested because of an inconclusive Cystic Fibrosis result should be taken as close to day 21 as possible.

Mark the card ‘CHT borderline’.

Ensure that the ‘repeat sample’ box is ticked on the card.

If an avoidable repeat is requested, offered to the parents and accepted for;

o Incomplete data on card

o Incorrect NHS number

o Insufficient blood sample

o Layering or compression of blood sample



o Contamination

o Taken before day 5

7.1. Samples should be obtained and received in the laboratory within 72 hours. The Antenatal & Newborn Screening Coordinator should be informed, via the Antenatal & Newborn Screening email when repeat Newborn Blood spot has been obtained or if there are any difficulties in collecting a repeat sample.

[email protected]

8. Babies who move into area before 1 year of age

The Child Health Records Department (CHRD) check twice weekly for all babies who have moved into the area in the previous month and who have no screening result recorded. CHRD informs the Community Paediatric Nurses, who contact the baby’s parents to offer screening.

If accepted a sample should be taken and results obtained within 15 days of Child Health Records Department receiving notification of the infant in the area.

Parents should be informed the routine screen for Cystic Fibrosis is not as reliable after 8 weeks of age if not performed.

If parents decline the offer a completed NBBS card should be sent to the screening laboratory marked ‘declined all tests.

Parents should be informed the result is not as reliable as when performed at the recommended time.

9. Failsafe

9.1. The Newborn Bloodspot Failsafe IT system is checked daily, Monday to Friday by the Antenatal & Newborn Screening Coordinator and in her absence DAU/ANC midwife.

9.2. Routine failsafe, repeat testing and systems in place for those babies who move into area can be found in Appendix 3

10. Training

All Midwives receive a annual newborn bloodspot screening update.

New starters and student midwives receive and Induction to the Antenatal & Newborn Screening Programmes at the Northern Devon Healthcare Trust

All Midwives are required to complete the National Screening Committee, Improving bloodspot quality e-learning, annually.

mailto:[email protected]



11. Contact Numbers

Antenatal & Newborn Screening Coordinator; 01271 314037

Child Health Records Department; 01769 575196

Newborn Bloodspot laboratory, Bristol; 0117 414 8412

12. Monitoring Compliance with and the Effectiveness of the Guideline

Standards/ Key Performance Indicators

12.1. Key performance indicators comprise:

12.2. Quarterly Key Performance Indicators (KPI)

12.3. NB1 the proportion of babies registered within the previous PCT both at birth and on the last day of the reporting period who are eligible for newborn bloodspot screening and have a conclusive result recorded on the Child Health Information System within an effective timeframe. For this KPI, PKU is used as a proxy for all tests and the test must be completed by 17 days of age.

12.4. NB2 the percentage of babies from whom it is necessary to take a repeat blood sample due to an avoidable failure in the sampling process.

12.5. NB3 the proportion of newborn blood spot screening results which are screen negative for all five conditions, available for communication to parents within six weeks of birth.

12.6. NB1 and NB3 data is provided and submitted to the National Screening Committee by the Child Health Department

Process for Implementation and Monitoring Compliance and Effectiveness

An ongoing audit of all avoidable repeat samples is completed by the Antenatal & Newborn Screening Coordinator/deputy and reported through quarterly Key Performance Indicators.

Compliance and effectiveness of the newborn bloodspot sampling is monitored by twice yearly screening board meeting and twice yearly operational group meetings.

13. References

National Institute of Clinical Excellence (2008) Antenatal Care: NICE guidelines (CG62)

www.nice.org.uk/guidnce/cg62

http://www.nice.org.uk/guidnce/cg62



National Screening Committee; Newborn Bloodspot Sampling Screening

guideline (2016)

https://www.gov.uk/government/publications/newborn-blood-spot-screening-sampling-guidelines

14. Associated Documentation

Antenatal & Newborn Screening Guideline (2017)



http://ndht.ndevon.swest.nhs.uk/antenatal-newborn-screening-guidelines/



Appendix 1: Newborn Bloodspot Screening Tests

Phenylketonuria (PKU) • Phenylketonuria (PKU) affects 1 in 10,000 • Inherited disorder. • Can cause brain damage through the build-up of phenylalanine. Symptoms develop > 3/12’s. Untreated causes mental retardation. • Treatment: a special diet is required for life. Aim to start treatment before 21 days to minimise effect on baby • Lofenalac formula feed for babies. • Beware that aspartame (diet drinks etc.) contains phenylalanine so avoid Congenital Hypothyroidism (CHD) • Congenital Hypothyroidism (CHD) affects 1 in 4,000. • Poses serious threat to physical and mental development if not treated. • Aim to start treatment by 21 days. • Treatment by Thyroid Replacement hormone Therapy 25 – 50mcg daily. • 10% transient or temporary. Usually due to mother being treated for hyperthyroidism in pregnancy. Sickle Cell disorders (SSD) • Sickle Cell disorders (SSD) affects 1 in 2,500. • Condition or trait can be detected by screening. • Inherited disorder, the carrier frequency dependent upon family origin. • Hundreds of different variants of haemoglobin, not all variants cause Sickle Cell disease, these are reported as clinically not significant • Sickled red blood cells do not live as long as normal ones, the spleen becomes enlarged trying to keep up with disposing of the cells. This leads to severe anaemia and susceptibility to infections. • Unidentified babies show signs in first year of life. The first time they become ill can be fatal. There is a reduced life expectancy if untreated • prophylactic antibiotic treatment to reduce risk from serious infections and pneumococcal immunisation • Parent education to recognise symptoms and seek quick treatment. • Bone marrow transplant. • Screening will also detect Sickle Cell carriers and β Thalassaemia Cystic Fibrosis (C.F.) • Cystic Fibrosis (C.F.) Incidence 1:2500, carrier prevalence 1 in 25. The CF gene is found on chromosome 7. • Screening avoids long delays in diagnosis • Treatment is vigorous from diagnosis with two aims: - improve nutrition with supplements containing enzymes to help digestion and to reduce chest infections with frequent physiotherapy, antibiotics and vaccinations. • Treatment can slow down effects but not stop it progressing. Average life expectancy 31 years



• Most males are infertile • Very complex test involving analysis of D.N.A. • Repeats may be required to complete the test. • Short time frame for test to be completed (within 8 weeks) • May provide false reassurance for those tested negative, but have a rare mutation Medium Chain Acyl-Coa Dehyrdrogenase Deficiency (MCADD) • MCADD gene found on chromosome 1 • It is thought that between 1 in 40 and 1 in 80 healthy people are carriers and do not have any symptoms. • Affects 1 in 10,000 – 20,000. Mainly Caucasian or Northern European background. • Hereditary condition. • Early detection allows a crisis to be avoided. • Inability to breakdown fat to use as an energy source • Occurs when child has prolonged fasting time e.g. due to illness particularly diarrhoea and vomiting • Congenital Hypothyroid Disease (CHD) • The high levels of partially broken down fatty acids and low blood glucose concentrations together cause the child to become drowsy, comatose and eventually stop breathing • >50% with M.C.A.D.D. die from their 1st crisis if it occurs after 2 years. • Treatment is prevention of metabolic crisis; avoid fasting. If unwell, give Glucose drinks & intravenous Dextrose • Parents should be advised to take their child to hospital if unwell for long periods • If not diagnosed early children usually present around 14 months when a third already have neurological problems. • Screening will provide early diagnosis to help prevent metabolic crisis, neurological damage and sudden death • Direct to relevant clinician immediately if disorder suspected or carrier identified. • Normal result (disorder not suspected) direct to GP and/or HV via the Child Health Information Team’s (C.H.I.T.) Maple Syrup Urine Disease (MSUD) • Problem breaking down Leucine, Isoleucine and Valine Amino acids. • Affects 1:116,000 • Many babies become unwell when a few days old with: poor feeding, vomiting, excessive sleepiness. Symptoms can present before blood spot screening results are known. • If untreated MSUD can cause coma and permanent brain damage or death in some cases. In older children a minor illness eg gastric upset can lead to serious problems. • Treatment is in the form of a special low protein diet, to prevent the build, up of harmful amino acids in the blood. A different regime is required when the child is ill and they may need to be hospitalised • Babies can become suddenly and seriously ill and will need to be seen immediately- they may be offered transfer via ambulance.



• Babies cannot be exclusively breastfed. www.expandedscreening.org/site/home/metabolic-msud-introduction.asp Isovaleric Acidaemia (IVA) • Problem breaking down Leucine amino acid • Affects 1:155,000 • Early signs may include vomiting, excessive sleepiness, floppiness, rapid breathing. • If untreated IVA can cause coma and permanent brain damage or death in some cases. Some babies with IVA have problems within a few days of birth; others become unwell at a few months or years of age perhaps during minor illness. • Treatment is in the form of a special low protein diet and carnitine and glycine. A different regime is required when a child is ill and they may need to be hospitalized • Babies can become suddenly and seriously ill and will need to be seen immediately- they may be offered transfer via ambulance. • Babies cannot be exclusively breastfed. www.expandedscreening.org/site/home/metabolic-iva-introduction.asp Glutaric Aciduria type 1 (GA1) • Problem breaking down Lysine and tryptophan amino acids. • Affects 1:109,191 • A minor illness such as a chest infection or a gastric upset can lead to serious problems. Early signs may include: vomiting, irritability, excessive sleepiness, floppiness, breathing difficulties. If a child with GA1 has these symptoms, they should be taken straight to hospital. • Without treatment, many patients will sustain injury to the brain, usually around 9 months. The child can go into a coma and be left with neurological damage so immediate is required on identification. • Treatment in the form of a special low protein diet and carnitine. A different regime is required when the child is ill and they may need to be hospitalized. • Babies cannot be exclusively breastfed www.expandedscreening.org/site/home/metabolic-ga1-introduction.asp Homocystinuria (HCU) • Problem breaking down Homocysteine anino acid • Affects 1:144,000 • Babies do not have any problem at birth • If untreated, babies with HCU are usually well in early life, although symptoms, may, develop later in untreated. Learning difficulties and eye problems as a young child, canlead to osteoporosis and blood clots or strokes. • Treatment is in the form of a special low protein diet, extra Supplements and medicines.

http://www.expandedscreening.org/site/home/metabolic-iva-introduction.asp

http://www.expandedscreening.org/site/home/metabolic-ga1-introduction.asp



• Babies cannot be exclusively breastfed. www.expandedscreening.org/site/home/metabolic-hcu-introduction.asp

http://www.expandedscreening.org/site/home/metabolic-hcu-introduction.asp



Appendix 2: DECLINE OF NEWBORN BLOOD SPOT SCREENING

<INSERT parent name> <INSERT parent address>

Antenatal & Newborn Screening

Coordinator Ladywell unit

Northern Devon Healthcare Trust

Raleigh Park

Barnstaple

EX34 0AN

01271 314037

DECLINE OF NEWBORN BLOOD SPOT SCREENING Dear <parent name>, Re: <INSERT baby’s name>

<INSERT baby’s NHS number> <INSERT baby’s date of birth>

I am writing to confirm that you have declined the offer of newborn blood spot

screening for your baby for <INSERT all conditions> <INSERT some conditions –

name tests declined).

Newborn blood spot screening involves taking a blood sample to find out if your baby

is at risk of one of several rare but serious health conditions. If these conditions are

detected early, they can be treated effectively. However, if they are not detected

early, they may cause irreversible harm to your child. Screening is not compulsory,

but it is strongly recommended because it could save your baby's life.

Information on the conditions screened for is available in the ‘Screening tests for you

and your baby’ booklet (www.gov.uk/government/publications/screening-tests-for-

you-and-your-baby-description-in-brief) and on NHS Choices

(www.nhs.uk/Conditions/pregnancy-and-baby/Pages/newborn-blood-spot-test.aspx).

If you change your mind

http://www.gov.uk/government/publications/screening-tests-for-you-and-your-baby-description-in-brief

http://www.gov.uk/government/publications/screening-tests-for-you-and-your-baby-description-in-brief

http://www.nhs.uk/Conditions/pregnancy-and-baby/Pages/newborn-blood-spot-test.aspx



You have the right to decline screening for your baby and we will record this in your

baby’s health records. However, if you change your mind, screening can be done up

to a year of age but only for some of the conditions. In the meantime there is a risk

that your child may become seriously ill and suffer irreversible harm. Please contact

your midwife, health visitor or GP urgently if you would like your baby to be

screened, or if you would like further information or talk about any concerns.

Yours sincerely,

<INSERT signature>

For further information visit www.gov.uk/topic/population-screening-

programmes/newborn-blood-spot

http://www.gov.uk/topic/population-screening-programmes/newborn-blood-spot




Appendix 3: DECLINE OF NEWBORN BLOOD SPOT SCREENING

Antenatal & Newborn Screening Coordinator

Ladywell unit Northern Devon Healthcare Trust

Raleigh Park

Barnstaple

EX34 0AN

01271 314037

DECLINE OF NEWBORN BLOOD SPOT SCREENING Dear <GP/HV/CHRD name>, Re: <INSERT baby’s name>

<INSERT baby’s NHS number> <INSERT baby’s date of birth> <INSERT baby’s last known address>

I am writing to inform you that the parents of the child above have declined newborn blood spot screening for <all conditions> <some conditions – name tests declined>. Newborn blood spot screening is offered to all babies up to one year of age and screens for the rare conditions listed below: Sickle cell disease (SCD) Cystic fibrosis (CF) (can only be tested for babies up to 56 days of age) 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 (pyridoxine unresponsive) (HCU) Delete as applicable – for GP/HV: We are providing this information so that a record of decline is entered onto the medical record and to make you aware should the child present with any symptoms of the conditions normally screened for.



Although not as satisfactory, screening for all conditions except cystic fibrosis is available up to one year of age, if the parents change their minds. Delete as applicable – for CHRD: We are providing this information so that a record of decline is entered onto the child health information system. Yours sincerely, <INSERT signature> For further information visit www.gov.uk/topic/population-screening-programmes/newborn-blood-spot

