DOCUMENT CONTROL:

Version: 3

Ratified by: Quality Assurance Sub Committee

Date ratified: 3 April 2018

Name of originator/author: Advanced Nurse Practitioner and Louise King, Health Visitor

Name of responsible committee/individual:

Clinical Policy Review Group

Date issued: 22 May 2018 (Amendment)

Review date: May 2020

Target Audience Children’s Care Group

Newborn Blood Spot Screening Policy and Procedure

(Children’s Care Group: 0 – 5 years Pathway)

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Section

CONTENTS

Page No

1 INTRODUCTION 3

2 PURPOSE 3

2.1 Definitions 3

3 SCOPE 6

4 RESPONSIBILITIES, ACCOUNTABILITIES AND DUTIES 7

4.1 Board of Directors 7

4.2 Care Group Director 7

4.3 Clinical Leads 7

4.4 Clinical Staff 7

5 PROCEDURE/IMPLEMENTATION 8

5.1 Asking the question and seeking documentary evidence 8

5.2 Giving feedback to Child Health Department 9

5.3 Health Visiting action to take where there is no documentary evidence

9

5.4 Definition of ‘designated blood spot screener’ 9

5.5 Making the Offer 9

5.6 What to do if the parent/s accept the offer 10

5.7 What to do if the baby does not have an NHS number 10

5.8 What happens after a New Born Blood Spot screening test is carried out

10

5.9 What to do if parent/s decline the offer 11

5.10 What to do if parent(s) continue to decline all or part of the offer, having made an informed choice

11

5.11 Repeat blood spots 12

5.12 Audit of repeat blood spots 12

5.13 PROCEDURE FOR BLOOD SPOT SAMPLING 12

5.14 Documentation 13

5.15 Performing the heel prick 13

6 TRAINING IMPLICATIONS 18

7 MONITORING ARRANGEMENTS 18

8 EQUALITY IMPACT ASSESSMENT SCREENING 19

8.1 Privacy, Dignity and Respect 19

8.2 Mental Capacity Act 20

9 LINKS TO ANY ASSOCIATED DOCUMENTS 20

10 REFERENCES 21

11 APPENDICES 21

Appendix A 22

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1. INTRODUCTION This Policy is intended for use by all members of the Doncaster’s Health Visiting Team with a nursing qualification and current Nursing and Midwifery Council (NMC) registration. Screening aims to identify babies who are at high risk of having certain serious but rare conditions before they develop symptoms. Screening is not the same as diagnosis; instead it identifies which babies need to go on to have diagnostic tests to determine whether or not they do have the condition. By detecting these conditions early it is possible to treat them and reduce their severity. Newborn blood spot screening is an essential part of the national child public health programme and is offered to all babies in the United Kingdom. The conditions screened for in Doncaster are:

Congenital Hypothyroidism (CHT)

Phenylketonuria (PKU)

Sickle Cell Disorders (SCD)

Cystic Fibrosis (CF)

Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD).

Maple Syrup Urine Disease (MSUD)-

Isovaleric Acidaemia (IVA)

Glutaric Aciduria Type 1 (GA1)

Homocystinuria (Pyridoxine Unresponsive) (HCU) The blood spot sample should ideally be taken on day 5 by the midwife, and certainly between days 5 and 8 for all babies, regardless of milk feeding and/or prematurity. However, local health visiting service is responsible for blood spot testing of babies moving into an area or transferring in from outside Doncaster and outside England up to one year of age.

2. PURPOSE

Newborn blood spot screening identifies babies who may have rare but serious conditions. Most babies screened will not have any of the conditions but, for the small number that do, the benefits of screening are enormous. Early treatment can improve their health and prevent severe disability or even death (Ref UKNSC (2016) ‘Screening tests for your baby’ https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/529950/STFYAYB_May_2016_for_website.pdf

2.1 DEFINITIONS

Congenital Hypothyroidism (CHT) About one in 3,000 babies born in the UK has congenital hypothyroidism (CHT). Babies with CHT do not have enough of the hormone thyroxin. Without this hormone, they do not grow properly and can develop a serious, permanent physical and mental disability.

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Screening means that babies with CHT can be treated early with thyroxin tablets, which will prevent serious disability and allow them to develop normally. If babies are not screened and are later found to have CHT, it may be too late to prevent them becoming seriously disabled. Phenylketonuria (PKU) About one in 10,000 babies in the UK has phenylketonuria (PKU). Babies with this inherited condition cannot process a substance in their food called phenylalanine. If untreated, they will develop a serious permanent mental disability. Screening means that babies with the condition can be treated early through a special diet, which will prevent severe disability and allow them to lead a normal life. If babies are not screened, but are later found to have PKU, it may be too late for the special diet to make a real difference. Sickle Cell Disorders (SCD) About one in 2,000 babies born in the UK has a sickle cell disease (SCD). These are inherited diseases that affect the red blood cells. If a baby has a sickle cell disease, their red blood cells can change to a sickle shape and become stuck in the small blood vessels. This can cause pain and damage to the baby’s body, serious infection, or even death. Screening means that babies with SCD can receive early treatment, including immunisations and antibiotics, which, along with parent education, will help prevent serious illness and allow the child to live a healthier life. Cystic Fibrosis (CF) About one in 2,500 babies born in the UK has cystic fibrosis (CF). This inherited condition can affect the digestion and lungs. Babies with CF may not gain weight well and frequently have chest infections. Screening means that babies with CF can be treated early with a high-energy diet, medicines and physiotherapy. Although a child with CF may still become very ill, early treatment is thought to help them live longer, healthier lives. If babies are not screened and they do have a condition, they can be tested later but parents may have an anxious time before CF is recognised. Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD) About one in 10,000 babies born in the UK has MCADD. Babies with this inherited condition have problems breaking down fats to make energy for the body. This can lead to serious illness, or even death. Screening means that most babies who have MCADD can be recognised early. This allows special attention to be given to their diet, including making sure they eat regularly. This care can prevent serious illness and allow babies with MCADD to develop normally. Screening babies for MCADD is

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important so the condition can be identified before the babies become suddenly and seriously ill. Maple Syrup Urine Disease (MSUD) About one in 185,000 babies worldwide are thought to be affected by MSUD. Babies with this inherited condition are unable to process some amino acids (the building blocks of proteins) causing a harmful build-up of substances in the blood and urine. This can lead to serious illness, or even death. Screening means that most babies who have MSUD can be recognised early. This allows special attention to be given to their diet, including making sure they eat regularly. This care can prevent serious illness and allow babies with MSUD to develop normally. Screening babies for MSUD is important so the condition can be identified before the babies become suddenly and seriously ill. Isovaleric Acidaemia (IVA) About one in 250,000 babies are thought to be affected by IVA. Babies with this inherited condition are unable to process the Amino Acid Leucine causing metabolic crisis. This can lead to serious illness, or even death. Screening means that most babies who have IVA can be recognised early. Ensuring the child is given a low protein diet. This care can prevent serious illness and allow babies with IVA to develop normally. Screening babies for IVA is important so the condition can be identified before the babies become suddenly and seriously ill.

Glutaric Aciduria Type 1 (GA1) About one in 100,000 children worldwide are thought to be affected by GA1. Babies with this inherited condition are unable to process some Amino Acids. This can lead to serious illness, or even death. Screening means that most babies who have GA1 can be recognised early. Ensuring the child follows a restricted protein diet. This care can prevent serious illness and allow babies with GA1 to develop normally. Screening babies for GA1 is important so the condition can be identified before the babies become suddenly and seriously ill. Homocystin Uria (pyridoxine unresponsive) (HCU) About one in 250,000 children worldwide are thought to be affected by HCU. Babies with this inherited condition are unable to process the Amino Acid Methio Nine. This can lead to serious illnesses developing later in life. Screening means that most babies who have HCU can be recognised early. Ensuring the child receives vitamin B6 supplements and follows a restricted protein diet. This care can prevent serious illness and allow babies with HCU

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to develop normally. Screening babies for HCU is important so the condition can be identified before potential serious symptoms develop.

3. SCOPE

This Policy aims to provide clear guidelines to health visiting teams about newborn blood spot screening, in order to:

Comply with the UK Newborn Screening Committee policies and standards

Provide a safe and effective screening service for repeat samples

Deliver ‘not suspected’ results to families in a timely manner

Understand the process for delivery of carrier results to families

Detect unscreened babies moving into Doncaster

REQUIREMENT ACTION

Who should be aware of the Policy and where to access it

Children’s Care Group area Service Managers, Team Leaders, Designated Lead for blood spot screening, Child Health Department, Health Visitors

Who should understand the Policy Children’s Care Group area Service Managers, Team Leaders, Designated Lead for blood spot screening, Child Health Department, Health Visitors

Who should have a good working knowledge of the Policy

Children’s Care Group area Service Managers, Team Leaders, Designated Lead for blood spot screening, Child Health Department, Health Visitors

Whether the Policy should be included in the General Trust Induction programme and/or departmental specific induction programme

Department-specific induction programme.

Health Visiting /Student Health Visitor induction programmes.

Where is the policy available Trust internet

Copy to be sent to HR with a request for inclusion in induction documents

No

Copy to: IT IT for Internet site

Process for monitoring the effectiveness of this document

Audit and data collection

Patient version UKNSC (2016) leaflet ‘Screening tests for your baby

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REQUIREMENT ACTION

Groups/persons consulted Children’s Care Group area Service Managers, Team Leaders, Designated Lead for blood spot screening, Child Health Department, Health Visitors and Doncaster and Bassetlaw Hospital’s Antenatal screening co-ordinator.

Training All members of Local health visiting teams with a nursing qualification and current Nursing and Midwifery Council (NMC) registration will undertake training as part of their induction and attend refresher training as required.

All designated ‘blood spot screeners’ will undertake appropriate on-going training and be competent to practice the procedure.

4. RESPONSIBILITIES, ACCOUNTABILITIES AND DUTIES 4.1 Board of Directors

It is the responsibility of the Board of Directors to have policies in place that meet any legislation, national and local requirements and promote best practice.

4.2 Care Group Director

The Care Group Director is responsible for the implementation of the policy within their specific areas.

4.3 Clinical Leads

The service Manager and Team Leaders have responsibility to ensure that all appropriate staff have protected time to attend training and updates.

4.4 Clinical staff

The individual Health Visitor is accountable for their practice under the guidance of the Nursing and Midwifery Council (NMC) Code of Professional Conduct (2015). Therefore, under no circumstances should a nurse undertake Bloodspot testing procedure unless he or she has the appropriate knowledge, attended appropriate training and have completed the relevant Clinical Skills Training Package and feels competent to do so. It is the responsibility of the individual nurse to inform his or her manager if they do not have the appropriate training. All staff are required to ensure adequate records are maintained at all times.

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5 PROCEDURE/IMPLEMENTATION

Child Health Department (currently provided by the Doncaster and Bassetlaw Hospitals NHS Foundation Trust) and the health visiting Blood Spot Leads are responsible for blood spot testing of babies moving into the area for all babies from 29 days of age up to one year of age. It is the joint responsibility of Child Health Service and The Health Visiting Service for establishing a blood spot outcome for all babies before their first birthday. An outcome is defined as either a ‘full result of the blood spot test’ or a ‘declined offer’. The Health Visiting Service is responsible for recording each stage of the process for babies under 1 year of age and who move into Doncaster and who may have been born elsewhere. (i.e. from the first question, to the offer, any action taken and the eventual outcome) in the Red Book, i.e. Personal Child Health Record (PCHR), and the SystmOne/TPP Record. Health Visitors are to assess at the new birth visit whether baby has been screened (see below). Untested babies are defined as those babies who do not have a screening result or a ‘decline’ notification for each of the conditions for which the screening is offered and the Child Health Department is responsible for detecting babies from the district who have not been screened. On identification of untested babies, the screening process should be ‘fast-tracked’ for parents wishing to have their child screened and parents provided with the pre-screening leaflet, ‘Screening tests for your baby’ (UKNSC 2016). If the baby is under 28 days old and has not been screened, the Health Visitor should contact the Community Midwifery office to inform relevant midwifery team to arrange sample to be taken. Over 28 days old, the Health Visitor should refer onwards to the appropriate designated blood spot Lead. All ‘not suspected’ results received from Child Health Department must be recorded in the Red Book, and the electronic health visiting records on the TPP/SystmOne journal, and discussed with the parents/carers at the initial birth visit.

5.1 Asking the question and seeking documentary evidence

All Health Visitors must ask parent/s the following question, recording the answer in the Red Book, and the TPP/SystmOne record: ‘Has your baby received a New Born Blood Spot (NBBS) screening test? At:

The new birth visit

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For all ‘transfer in’ visits of babies under one year old, including babies under the age of one year old who have moved into the area from another country

For any baby under one year old highlighted to the Health Visitor by the Child Health Department as having a ‘missing NBBS outcome’

Even if parents answer ‘Yes’ to the question, Health Visitors must try to establish whether or not there is clear documentary evidence (e.g. in the Red Book, or in Health Visitor records) giving a definitive NBBS result for all conditions screened for in England.

5.2 Giving Feedback to Child Health Department

Health Visitors must feedback an update of any action taken (e.g., visit carried out, offer made, blood spot sample taken, etc.) to Child Health within four weeks where:

There is clear documentary evidence of a NBBS result for a ‘transfer-in’ baby

or

There has been a request from Child Health for information about ‘missing outcomes’, including any Health Visitor action taken.

5.3 Health Visiting action to take where there is no documentary evidence

If there is no clear documentary evidence the health visiting team will make a referral to the designated blood spot screener to arrange the visit when the screening offer will be made. Using a standard letter ( Appendix A), the Blood Spot Lead Health Visitor contacts the parent/s prior to making the screening offer, providing them with information about the NBBS screening test, including the leaflet ‘Screening tests for your baby’ (UKNSC 2016). Translated copies are available at http://www.screening.nhs.uk/annbpublications

5.4 Definition of ‘designated blood spot screener’

Health Visitors and/or community Staff Nurses will be identified appropriately and will receive additional training and assessment of competence in the practice of Newborn Blood spot Sampling

5.5 Making the offer

The designated blood spot Lead Health Visitors will visit the parent/s to make the NBBS offer, using interpreter services if required, and to invite the parent/s’ informed consent for NBBS screening test, confirming that they understand the risks if the baby is not screened.

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Consent and reference to the provision of written information must be recorded in the Health Visitor record chronology, the Red Book, and TPP/SystmOne record.

5.6 What to do if the parent/s accept the offer

Dried Blood Spot samples will be taken in the community only by a trained and competent designated blood spot screener.

The designated blood spot screener completes Blood Spot card in full (including the NHS number and all other relevant data fields), ensuring the card has not exceeded its expiry date, and carries out the screening test with reference to the ‘Guidelines for Newborn Blood spot sampling’ (DoH 2016).

The designated blood spot screener despatches the completed card by using the glassine bag and prepaid envelopes, within 24 hours (preferably the same day) to the Newborn Screening Lab at Sheffield Children’s NHS Foundation Trust, Sheffield.

5.7 What to do if the baby does not have an NHS number

Provided that the blood spot cards are clearly marked as: No NHS Number the sample will be accepted by the laboratory as a valid exception and the results for that baby will be issued to the Child Health service.

Example: Baby moves into Doncaster, with no NHS number and unable to register with a GP:

Health Visitor MUST write No NHS Number clearly on the blood spot card

Please note that if this is not indicated clearly on the blood spot card, and there is no NHS number for the baby, the Health Visitor Screening Lead will receive a request for a repeat blood spot from the Child Health service. In this instance a repeat blood spot must be undertaken.

Please note: It is understood that health care professionals must encourage parents to register with a GP and make every effort to obtain the NHS numbers where possible.

DECLINED OFFERS, no NHS number Where a baby has moved in to Doncaster, has no NHS number, and is unable to register with a GP, but the parent/carer declines the NBBS offer , Health Visitors should inform the Child Health Service of this outcome without delay .

5.8 What happens after a New Born Blood Spot screening test is carried out

The Newborn Screening Lab checks that the sample is satisfactory and that there is sufficient blood to complete screening on all nine tests and that all

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data fields are completed.

After review and action, the Newborn Screening Lab notifies the Child Health Service of results or the need for a repeat test where necessary. This communication is undertaken electronically.

The Child Health Service will record the screening results on SystmOne and will write to parents to inform of results on day 21 (or when the results have been received) where none of the screened conditions are suspected (i.e. ‘negative’ results)

Results that show that any one or more of the conditions screened for is suspected will be dealt with directly by the Newborn Screening Lab, using existing guidelines, including initiating an immediate clinical referral.

Within Doncaster areas if a carrier for cystic fibrosis is identified the specialist nurse(s) from Sheffield Children’s NHS Foundation Trust, contacts the Child Health Service who provide the name of the Health Visitor or Health Visiting Team, a joint home visit is then arranged with the Health Visitor and the specialist nurse. The specialist haemoglobinopathy nurse will contact parents, the GP and the relevant Health Visiting Team regarding any carrier results for haemoglobinopathies (Sickle Cell Disorder).

5.9 What to do if parent/s decline the offer

If parents decline all or part of the offer, the reason for their decision should be explored by the designated blood spot screener and further information offered. However, parents should not be unduly pressured, although they need to be making an informed choice.

Guideline Reasoning Communication with the parent/s should include the following information:

- Respect the client’s decision

- Explore the reasons for their decision

- Confirm the parent/s understand the risks of the baby not being screened

To confirm the decision with the client

- That the practitioner respects their right to make the decision

- Would they like to discuss the tests further with you, or another person?

- Would they be willing to explain their reason for their decision?

- Offer further information of who to contact if they change their mind

5.10 What to do if parent(s) continue to decline all or part of the offer, having

made an informed choice

The designated blood spot screener completes Blood Spot card in full (including the NHS number and all other relevant data fields), highlights the

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‘declined offer’ in writing, and returns the completed card to the Newborn Screening Lab at Sheffield Children’s NHS Foundation Trust using the glassine and prepaid envelopes.

Using a standard letter (see 9.3 Appendix A), the designated blood spot screener should also notify the child’s General Practitioner of a ‘declined offer’.

5.11 Repeat blood spots

Repeat blood spots will be requested by the Newborn Screening Lab at Sheffield Children’s NHS Foundation Trust, for a variety of reasons including: no NHS number, insufficient samples, inadequate samples, inconclusive results and for premature infants and for babies who have had a blood transfusion.

Please refer to the ‘Guidelines for Newborn Blood spot sampling’ (DoH 2016). The Newborn Screening Lab will inform the Child Health Service when repeat tests are due to organise sample collection, normally within 72 hours.

Repeat requests prior to 28 days delivery are the responsibility of the Midwifery Service and Neonatal Units.

5.12 Audit of repeat blood spots

The Newborn Screening Lab is responsible for auditing the requests for repeat heel prick tests as part of the Clinical Governance process to feedback at local and regional level.

5.13 PROCEDURE FOR BLOOD SPOT SAMPLING

Ref. Guidelines for Newborn Blood spot sampling (UKNSC 2016).

Equipment required

Blood spot card and glassine envelope (Please note – always ensure that the card is not used beyond the expiry dated printed on it)

Automated newborn tender foot lancet device

Pre-paid envelope

Non-sterile protective gloves

Sharps box

Hand Sanitiser gel

Cotton wool/gauze

Unperfumed soap

Water

Hypoallergenic spot plaster

Electronic Journal on SystmOne

Personal Child Health Record (PCHR) i.e. Red Book

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5.14 Documentation

It is essential that the Blood Spot card is completed in full. There is a zero tolerance in the laboratory and samples will not be tested if data fields are blank. The NHS number must be handwritten on the blood spot card if there is no bar-coded label. Please note – always confirm baby’s name, date of birth and parent’s contact details. If parents decline all parts of the offer, the designated blood spot screener should:

Send completed card (without blood sample) clearly marked ‘DECLINE’ to the Newborn Screening Laboratory at Sheffield Children’s NHS Foundation Trust, recording information given and outcome in the Red Book and TPP/SystmOne record.

Notify GP of declined offer. If parents decline part of the offer, the designated blood spot screener should:

Confirm the parents understand the risks to the baby not being screened, offering further information and who to contact if they change their minds (i.e. the local Health Visitor team), recording consent, information given, and outcome in the, Red Book and TPP/SystmOne electronic record.

Complete the Blood Spot card (with blood sample), but mark the part of the offer that has been declined clearly with ‘DECLINE’, and despatch the completed Blood Spot card in the prepaid envelope within 24 hours (preferably the same day) to the Newborn Screening Lab at Sheffield Children’s NHS Foundation Trust

5.15 Performing the heel prick

Protocol statement The instructions in this protocol should be followed, and reasons for deviation from this protocol must be documented, for clinical, ethical and legal purposes. 1. See leaflet Guidelines for Newborn Blood Spot Sampling (PHE 2016) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/511688/Guidelines_for_Newborn_Blood_Spot_Sampling_January_2016.pdf

2. Taking the blood spot involves balancing the need to collect sufficient blood with the potential for discomfort for the baby and unease for the parents. The following procedures have been drawn from the ‘Guidelines for

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Newborn Blood spot sampling’ (PHE 2016) to ensure the procedure goes as smoothly as possible.

3.

Action Reasoning

Complete all boxes on the card and apply baby’s barcode label (when available). If barcode label is unavailable the NHS number should be handwritten on the card.

To ensure correct details and to enable sample / results to be tracked.

When completing the card care must be taken to avoid contamination through placing the card on a dirty surface or through touch

To avoid contaminating the blood spot sample

Verbally confirm parental informed consent to procedure and document in records

To ensure informed consent

Recommend comfort measures for baby. To comfort the baby

Feeding, sucking and engaging the baby through face-to-face contact, voice and touch, is beneficial.

To comfort the baby, and to make it easier for the baby to regain his/her calm

Ensure that the baby is cuddled and in a secure position for taking the sample.

To make it easier for the baby to regain his/her calm and comply with the procedure.

The blood sample should be taken from a clean heel. Skin must be meticulously clean and it should be washed with plain water. Unperfumed soap may be used.

To prevent contamination of the sample that can affect the results of the spread of micro-organisms

Wash hands or use hand sanitising gel and apply gloves

Universal to prevent spread of micro-organisms precaution of taking blood

Perform the test using an automated lancet device designed for use on newborns (specific device for taking bloodspot heel prick test).

To reduce pain, bruising and obtain the sample more quickly. To reduce the risk of accidental injury from manual lancets

When sample collection is complete, wipe excess blood from the heel and apply gentle pressure to the wound with cotton wool or gauze.

To prevent excessive bleeding and bruising and to protect the wound.

Apply a hypoallergenic spot plaster if required and remind the parent to remove the plaster in a few hours.

Safely dispose of all equipment, including gloves

Health and safety of staff and patients

Decontaminate hands by washing or using hand sanitiser gel

To prevent spread of micro organism

Document in Red Book and electronic SystmOne record.

Contemporaneous and full record keeping

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4. Allow foot to hang down to increase blood flow. Heel puncture should be performed on the plantar surface of the heel, beyond the lateral and medial limits of the calcaneus, marked by the shaded areas in the diagram overleaf. 5. Avoid posterior curvature of the heel. Before activation, place automated device firmly against the heel. The aim is to minimize the risk of calcaneal puncture that may lead to calcaneal osteomyelitis (inflammation of the heel bone).

6.

Action Reasoning

The aim is to fill the circles on the newborn blood spot card completely.

Wait up to 15 seconds to allow blood to flow. Apply the blood drop to one side of the card.

The laboratory punches out several circles of the blood spot for analysis. The sample needs to be sufficient to screen for all of the conditions and to be retained if retesting is required to check equivocal or positive results.

Allow the blood to fill the circle by natural flow, and seep fully through to the back of the card.

Fill the circle completely and avoid layering blood.

Layering of the blood is unacceptable for testing (see diagram overleaf) because too much blood can cause erroneous results

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Action Reasoning

Dispose of automated device in sharps bin To ensure safe disposal of lancet as per infection control policy, sharps usage and disposal

Wipe excess blood from the heel and apply gentle pressure to the wound.

To prevent excessive bleeding and bruising and to protect the wound

If the baby is not bleeding a second prick is necessary:

The second prick should be taken from a different part of the same foot (within the area indicated above) or the other foot

The original site is avoided to prevent sample containing excessive tissue fluid and reduce pain

Remove gloves and dispose in accordance with infection control policy and clinical waste management policy

Infection control and clinical waste management

7.

Circle filled and Layering Insufficient multiple evenly saturated applications 8. After taking the blood sample It is important that the Newborn Screening Lab at Sheffield Children’s NHS Foundation Trust receives the blood sample promptly (i.e. that, once taken, it is despatched within 24 hours, using the prepaid envelope to ensure that babies with the conditions are seen quickly. Parents also need to know when to expect the results. This will help reduce their concerns about the results, as well as providing an additional safety net in following up missing results. 9.

Action Reasoning

If a parent does not wish to be contacted about future research about newborn blood spot screening, the health professional collecting the blood sample should mark ‘NO RESEARCH CONTACT’ on the blood spot card

In accordance with the Code of Practice for the storage and use of residual blood spots.

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Action Reasoning

Allow blood spots to air-dry before placing in the glassine envelope

Wet samples can stick to the envelope and a repeat sample will be required

The glassine envelope should be placed in an envelope with pre-printed address stickers inserted on and despatched within 24 hours, preferably on the same day via the prepaid envelope

Timeliness of dispatch enables early analysis and subsequent treatment

The practitioner taking and posting the sample should record the sample date and posting/dispatch date

In the event that a sample is delayed/ missing, this information may be requested to audit the process as part of on-going quality improvements

Clearly record taking the test in, the Red Book (PCHR) and onto TPP/SystmOne record.

Inform Bloodspot Lead (or , if Lead unavailable, Child Health Service) of action taken

To comply with record keeping guidelines from the Nursing and Midwifery Council and the RDaSH Record Keeping Policy

Practitioner to inform parents how and when they will receive results

To ensure parents know what to expect in terms of the reporting of results and assists parents getting results

10.

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6. TRAINING IMPLICATIONS

With reference to the UKNSC Competency Document (2011), ‘Taking blood spot samples from babies using an automated device for purposes of new born blood spot screening’ , the following section outlines the responsibilities of staff who are trained and assessed as competent to carry out blood spot testing. It is expected that the Lead Health Visitors for Blood Spot will:

Have undertaken appropriate training

Accept responsibility for their practice

Maintain up-to-date knowledge and skills

Follow the National Guidelines for taking blood spot samples.

It is expected that all Doncaster designated blood spot screeners will:

Have undertaken appropriate training and be competent to practice the procedure

Accept responsibility for their practice

Maintain up-to-date knowledge and skills

Follow the national guidelines for taking blood spot samples

Newborn Blood Spot Screening Policy

Staff groups requiring training

How often should this be undertaken

Length of training

Delivery method

Training delivered by whom

Where are the records of attendance held?

Health Visitors

Initial Competency

Refresher as required

1 hour Competency package

Bloodspot Champion with Midwifery support

Electronic Staff Record system (ESR)

7. MONITORING ARRANGEMENTS

Area for Monitoring

How Who by Reported to

Frequency

Compliance with the policy as set out in this document in relation to Bloodspot testing–

Training

Audit of Bloodspot tester initial training

Annual e-record audit of 50 records of children at 1

Bloodspot Lead

Children’s Care Group Clinical Governance

Annually

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Area for Monitoring

How Who by Reported to

Frequency

Competency

Clinical records

year of age

Review of Bloodspot tester clinical activity via Clinical Supervision

Compliance with the policy as set out in this document in relation to Bloodspot Testing–

Analysis of Incidents/ IR1’s

On-going analysis of IR1 report and Actions.

Bloodspot Lead

Children’s Care Group Clinical Governance

Per each IR1 report

8. EQUALITY IMPACT ASSESSMENT SCREENING

The completed Equality Impact Assessment for this Policy has been published on this Policy’s webpage on the RDaSH Policy web library.

8.1 Privacy, Dignity and Respect

The NHS Constitution states that all patients should feel that their privacy and dignity are respected while they are in hospital. High Quality Care for All (2008), Lord Darzi’s review of the NHS, identifies the need to organize care around the individual, ‘not just clinically but in terms of dignity and respect’. As a consequence the Trust is required to articulate its intent to deliver care with privacy and dignity that treats all service users with respect. Therefore, all procedural documents will be considered, if relevant, to reflect the requirement to treat everyone with privacy, dignity and respect, (when appropriate this should also include how same sex accommodation is provided).

Indicate how this will be met

There is no requirement for additional consideration to be given with regard to privacy, dignity or respect.

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8.2 Mental Capacity Act

Central to any aspect of care delivered to adults and young people aged 16 years or over will be the consideration of the individuals capacity to participate in the decision making process. Consequently, no intervention should be carried out without either the individuals informed consent, or the powers included in a legal framework, or by order of the Court

Therefore, the Trust is required to make sure that all staff working with individuals who use our service are familiar with the provisions within the Mental Capacity Act. For this reason all procedural documents will be considered, if relevant to reflect the provisions of the Mental Capacity Act 2005 to ensure that the interests of an individual whose capacity is in question can continue to make as many decisions for themselves as possible.

Indicate How This Will Be Achieved.

All individuals involved in the implementation of this policy should do so in accordance with the Guiding Principles of the Mental Capacity Act 2005. (Section 1).

Staff implementing this Policy have undergone Mental Capacity Act training in Line with the Mandatory/Statutory training Framework for the Division.

9. LINKS TO ANY ASSOCIATED DOCUMENTS

Management of blood and body fluid spillages policy, Clinical Policies, Infection Control, RDaSH Intranet http://www.rdash.nhs.uk/23484/blood-and-body-fluid-spillages/

Newborn Bloodspot e-learning module https://cpdscreening.phe.org.uk/bloodspot-elearning Aseptic technique and aseptic non-tough technique policy, Clinical Policies, Infection Control, RDaSH Intranet http://www.rdash.nhs.uk/23477/aseptic-non-touch-technique-policy/

Waste Policy, Health and Safety Policies, RDaSH Intranet http://www.rdash.nhs.uk/24081/waste-policy/ Policy for Consent to Examination or Treatment, RDaSH Intranet http://www.rdash.nhs.uk/27029/provision-of-an-age-appropriate-environment-and-guidelines-to-inpatient-staff-on-the-care-and-treatment-of-patients-under-the-age-of-18/

Sharps Policy - Safe Use and Disposal of Sharps and Management of Contamination Injuries. RDaSH Intranet. http://www.rdash.nhs.uk/29268/sharps-policy/

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10. REFERENCES

Public Health England (2016) NHS Newborn Bloodspot screening Programme Web Links:

1. UK standards 2. Developing policies and standards 3. Standards for newborn blood spot screening August 2016 4. Standards revision 2012-13: consultation on the newborn

blood spot screening standards mapped to the generic standards framework

5. Changes to current policy: repeat testing for CHT in preterm infants

6. Consultation on standards for offer, coverage and timely identification of untested babies 2011

7. Proposed standards and policies for newborn blood spot screening June 2016

NMC Code of Conduct (2015) The Code: Standards of conduct, performance and ethics for nurses and midwives. http://www.nmc-uk.org/Publications/Standards/The-code/Introduction/ (Ref UKNSC (2016) ‘Screening tests for your baby’ https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/529950/STFYAYB_May_2016_for_website.pdf

Health Professionals Handbook: Newborn Bloodspot Screening https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/390977/Health_Professional_Handbook_2012_v1.0_December_2012.pdf

Newborn Bloodspot Screening Sampling Guidelines https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/511688/Guidelines_for_Newborn_Blood_Spot_Sampling_January_2016.pdf

11. APPENDICES

Appendix A. Staff should refer to the RDaSH Intranet to access a corporate letter template via the corporate templates pages

.

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Appendix A

Baby’s family name TRUST LOGO

Baby’s NHS number

Date of birth

Address

Date

Dear Parent/Carer

All babies and young children living in Doncaster up to the age of 1 year are offered

a Blood Spot Screening test. According to your child’s health records there appears

to be no record that your child has had this test.

I enclose a leaflet which explains the health benefits of blood spot screening and

outlines the conditions for which babies are screened.

I would like to call: on <date>

at, <time> to discuss this further.

Should you wish to contact me, my details are:-

<INSERT name of designated blood spot screener>, who can be contacted at:

<INSERT address of designated blood spot screener>

or by telephoning < designated blood spot screener phone number>.

Yours sincerely

<INSERT Job Title>

For further information visit www.newbornbloodspot.screening.nhs.uk

For general health advice and information you can visit:

http://www.screening.nhs.uk/annbpublications

Or call: