NHS Blood Spot Screening Programme

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NHS Blood Spot Screening Programme
Marie Coughlin Screening Lead July 26th 2010
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Todays Session

• Fourth of 6 Antenatal Newborn sessions
  throughout 2010

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Reasons for Todays Session

• As a result of ChaMPs commissioned review of
  screening
• A need to further engage public health in
  Antenatal Newborn Screening Programmes
• At the request of public health screening leads
• Part of CM Screening Action Plan
• Thought it useful to invite commissioners also

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Aim of the Session

• To increase knowledge base within public health
  and commissioning

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Session Format

• Overview of UK NSC/NWSHA structure
• Overview of Newborn Blood Spot screening
• Review of patient pathway
• Data, performance and QA
• Future developments
• Questions/comments

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Overarching Structure

• UK NSC oversees 6 Antenatal Newborn Screening
  Programmes
• UK NSC has defined accountability governance
  structure for SHA, PCT and provider
• Warm welcome to NWSHA team Rebecca Al-Ausi
  Sandra Smith

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North West Screening Team

• Shelagh Garnett SHA Screening Lead
• (Shelagh.Garnett_at_northwest.nhs.uk)
• Sandra Smith NW Antenatal, Newborn Child
  Health Screening Lead
• (Sandra.Smith3_at_alwpct.nhs.uk)
• Rebecca Al-Ausi NW Antenatal, Newborn Child
  Health Screening Manager
• (Rebecca.Al-Ausi_at_alwpct.nhs.uk)

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Newborn Blood Spot Screening

• UK Newborn Screening Programme Centre established
  in 2002
• Centre responsible for providing UK-wide quality
  assured Newborn Blood Spot Screening Programme
• Emphasis on patient choice as opposed to uptake
  rates
• Objective to create focus and identity for
  newborn blood spot services
• Objective to ensure equality of access
  reduction of health inequalities

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Programme Aims

• To offer informed choice
• 95 of first samples to be taken 5-8 days after
  birth
• 100 of samples to be received by Lab within 4
  working days of being taken
• 95 of blood spot cards to include bar-code label
  NHS number
• Positive results available and referral initiated
  within 3-4 working days of sample receipt by Lab
• 100 of babies untested to be identified by 19
  days of age

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Patient Pathway
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Newborn Blood Spot

• 5 Conditions
• Referral
• processes
• Pathway

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Conditions Screened

• Congenital hypothyroidism (CHT)
• Phenylketonuria (PKU)
• Cystic fibrosis (CF)
• Medium Chain CoA Dehydrogenase Deficiency (MCADD)
• Sickle Cell (and thalassaemia) SCD

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Congenital Hypothyroidism

• Unable to produce thyroxine
• 14000 births (150pa)
• 2.3/1 ?/? ratio
• Early diagnosis

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CHT Pathway

• Repeat sample ASAP
• Home visit
• Referral and treatment by day 21-28
• Commence thyroxine
• Successful IF commenced early

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PKU

• Inherited metabolic condition
• Prevents normal breakdown of protein
• Impaired brain function
• Successful dietary treatment
• Normal life expectancy
• Incidence 1.14/10,000 Caucasian
• 0.11/10,000 Black
• 0.29/10,000 Asian

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PKU Pathway

• Screen positive/suspected
• Home visit
• Paediatric referral day 21-28
• Effective dietary treatment

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Cystic Fibrosis

• Most common life threatening inherited disorder
• Affects internal organs
• Life expectancy 38yrs
• Early treatment essential
• Carrier rate 1 in 25
• 1 in 2,500 born per year 5/week
• 3 die/week

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CF Pathway

• Repeat sample day 21-28
• Specialist referral 24 hrs
• Carrier result
• Results to CHRD

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MCADD

• Inherited metabolic disorder
• Deficient enzyme used for energy transfer
• Neurological symptoms/damage
• Fatal
• 1 in 100 SIDS
• 1 in 10,000 babies born per year
• 1 in 80 carrier rate

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MCADD Pathway

• Laboratory informs primary care of result
• Face to face contact within 24 hrs
• DNA testing obtained
• Information given
• Result within 5 working days
• Referral within 24 hours
• Effective dietary treatment

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Sickle Cell Disorders

• Inherited disorder
• Abnormal haemoglobin
• Affects oxygen carrying capacity
• Malarial origins
• 1 in 2,400 births
• 12,500 have disorder
• 240,000 carriers

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SCD
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SCD Conditions

• HbSS
• HbSC
• HbSD
• HbS/ß thalassaemia (ß, ß0, dß, Lepore),
• HbS OArab
• HbS/HPFH

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SCD Pathway

• Face to face visit
• Repeat request
• Results by 28 days
• Specialist referral
• Commence treatment

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Child Heath Records Department(CHRD)

• Hold information on each child
• Monitor offer, uptake and coverage
• Report normal results
• Identify missing results/babies

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Pathway
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Contact details

• Sandra Smith
• NW Antenatal, Newborn Child Health Screening
  Lead (Coordinator)
• 01942 481709
• 07901 517252
• Sandra.Smith3_at_alwpct.nhs.uk

• Rebecca Al-Ausi
• NW Antenatal, Newborn Child Health Screening
  Manager (Deputy)
• 01942 481698
• 07810 506043
• Rebecca.Al-Ausi_at_alwpct.nhs.uk

http//www.screening.nhs.uk/bloodspot-england
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The Newborn Blood Spot
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Data Performance

• Trusts required to produce annual report
  difficult to obtain copies
• UK Newborn Screening Centre produce an annual
  report Details on next few slides

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Laboratory Denominator Data 2008/9
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Enhanced Tracking Abilities 2008/9
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Timely Sample Collection 2008/9
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Timely Sample Dispatch
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Liverpool Lab Screening Numbers 2008/9(cards
without NHS number 4,087)
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Avoidable Repeat Rates 2008/9
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Quality Assurance

• Limited QA process in place, mostly with QA of
  Laboratories
• Focus will be on timeliness of testing
  follow-up
• NWSHA team to develop comprehensive QA programme

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Key Challenges for the Programme

• Many samples for transfused babies not being
  taken
• Poor quality of samples received by Lab leading
  to high repeat rate
• Newborn Label Project difficult to obtain local
  IT support

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Future Developments

• Bar-code project
• Comprehensive QA processes

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Questions/Comments

• With regard to QA, how do we assure our Boards
  that local programmes run satisfactorily?
• Set of recommendations re Trust data issue for
  all 6 programmes has been submitted to CM DsPH
  and DoCs

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Thank You