Screening For The Haemoglobinopathies, (Neonatal and Antenat

Screening for the
Haemoglobinopathies
Follow-up and Counselling in

Lambeth, Southwark and Lewisham
Shirley Samuel
September 2007
© Collis Rochester-Peart, Service Co-ordinator/ Specialist Nurse Counsellor September 07
Screening for the Haemoglobinopathies
Follow-Up and Counselling
Introduction
• Overview of service models used to follow-up ante-natal and neo-natal screening results
• Explain our approach to counselling
• Size of population
September 2007
• Community-based, comprehensive nursing service
• Nurse-led programmes – case management; genetic counselling and screening;

health promotion and training; neonatal follow up of newly diagnosed babies.
• Three borough (Lambeth, Southwark and Lewisham) service
• Team of ten specialist nurses, supported by 4 Business Support staff
• Aim to promote universal screening and optimise timeliness in offering genetic

counselling and reproductive choices for couples
September 2007
Universal Antenatal Screening

• Results received from all three laboratories on a weekly basis
• The Centre informs women of their results and invites them for genetic
counselling
• Genetic counselling sessions held at least three times each week
September 2007
© Collis Rochester-Peart, Service Co-ordinator/ Specialist Nurse Counsellor
Follow-up and Counselling
Counselling Approach
• Client centred approach for both traits and affected cases catering for their cultural
and language needs
• Assess levels of anxiety – Distress

Give careful, sensitive explanation of inheritance.
Reassure re health status if carriers.
On-going assessment of parents’ acceptance of diagnosis if affected and referral
• Environment -
Highly tensed interaction, very emotive environment
Facilitate according to parent’s response
September 2007
Universal Antenatal Screening Programme

The Counselling Session
• Why are they there? Focus clients on the reason for inviting them for
genetic counselling
• What is the result about? Inform clients of the result with its individual and
genetic significance
September 2007
• Use of inheritance pattern to explain genetic significance
• Explore the implications with clients
• Encourage partner screening
• Outline options, including prenatal diagnosis
September 2007
• Reports sent to midwives and General Practitioners
• PND cases - refer to local hospital of booking
• Continued support irrespective of PND outcome
September 2007
Counselling Approach
• Non-directive
• Supportive
September 2007
LAMBETH, SOUTHWARK ANDLEWISHAM
Haemoglobinopathy Screeningof Women Oct07– August08
1-TimeFrame 2-No Results 3-No Of WomenWith 4-No Of Women With 5-No Partners 6-No Of Partners 7-No Of ‘At
Received ConfirmedTraits Major HbDisorder Screened With HbVariant Risk’Couples
265
Oct –Dec 07 397 4 70 28 14
Not including 31 ATNE
418
J an-Mar 08 525 19 105 37 33
416
Apr – J un 08 537 9 115 33 24
267
J uly-Aug 08 336 8 76 14 12
Totals 1795 1366 40 366 112 83
September 2007
Screening for the Haemoglobinopathies Follow-Up
and Counselling
CHALLENGES
Informed Population Preconceptual screening
Timeliness of Screening
Uptake of genetic counselling Education of Health Professionals
Risk Management Issues Improved IT Links
September 2007
Universal Neonatal Screening
4 Groups:
1. Normal, confirmed traits
2. Transfused babies
3. Recall of non-affected babies – carriers of unusual traits
4. Recall of affected babies
September 2007
Result Group 1:Normal

1 and confirmed
carrier states(traits)
• Screening Laboratory at King’s College Hospital informs Child

Health Register/Computer
September 2007
Result group 2: Transfused Babies

• Survival checks made before writing
to mothers
• Repeat testing is requested
• Results from repeat testing sent to parents, GP
• Kings notifies Child Health Computer
September 2007
Result Group 3:
3 Recall of non-affected –
Carriers of unusual traits
• Service Co-ordinator sends letters to mothers informing them of
possible results and need for confirmation by repeat testing; letter
also invites mothers to contact co-ordinator for further information
and genetic counselling , if required.
September 2007
Result Group 4: Affected babies

• Service co-ordinator receives result from laboratory, follow up delegated
to named SN on a borough basis
• Home visit arranged with Family’s Health Visitor to inform parents of the
result; GPs also informed of possible result and pending home visit
• On-going support and counselling commence by SN; referral to local

hospital
September 2007
Conclusion
• Timeliness is an important factor
• Multi-disciplinary approach and communication in providing a
comprehensive genetic and neonatal follow up service
• Cultural beliefs and values can influence decisions
• Acceptance of client’s decision
September 2007
© Collis Rochester-Peart, Service Co-ordinator/ Specialist Nurse Counsellor /Lambethpct

Screening For The Haemoglobinopathies, (Neonatal and Antenat

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Screening For The Haemoglobinopathies, (Neonatal and Antenat

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Screening for the

Follow-up and Counselling in

• Explain our approach to counselling

• Nurse-led programmes – case management; genetic counselling and screening;

• Three borough (Lambeth, Southwark and Lewisham) service

• Team of ten specialist nurses, supported by 4 Business Support staff

• Aim to promote universal screening and optimise timeliness in offering genetic

Universal Antenatal Screening

• Genetic counselling sessions held at least three times each week

• Assess levels of anxiety – Distress

Universal Antenatal Screening Programme

• Use of inheritance pattern to explain genetic significance

• Explore the implications with clients

• Encourage partner screening

• Outline options, including prenatal diagnosis

• Reports sent to midwives and General Practitioners

• PND cases - refer to local hospital of booking

• Continued support irrespective of PND outcome

Totals 1795 1366 40 366 112 83

Uptake of genetic counselling Education of Health Professionals

Risk Management Issues Improved IT Links

3. Recall of non-affected babies – carriers of unusual traits

4. Recall of affected babies

Result Group 1:Normal

• Screening Laboratory at King’s College Hospital informs Child

Result group 2: Transfused Babies

Result Group 4: Affected babies

• On-going support and counselling commence by SN; referral to local

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