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February 24, 2014

Dear Sir or Madam

I am writing in response to the recent publication of the World Health Organisation’s draft Every Newborn Action Plan.

The Trust was established to mark and celebrate Her Majesty The Queen’s 60-year contribution to the Commonwealth. Our mission is to enrich the lives of people of all backgrounds across the Commonwealth, through the themes of eliminating avoidable blindness and empowering a new generation of young leaders. The avoidable blindness programmes focus on the three major issues: the elimination of blinding trachoma and tackling retinopathy of prematurity and diabetic retinopathy across the Commonwealth.

As a member of The International Agency for The Prevention of Blindness (IAPB) and with a seat on their board, the Trust is working closely with all key stake holders in the eye health sector. For more than a year now, IAPB and The Trust have been working closely to explore key emerging issues around avoidable blindness and building new collaborative partnerships.

As part of this work in avoidable blindness the Trust is funding a five year programme to reduce the rates of retinopathy of prematurity in India. The Trust is working closely with the Public Health Foundation of India (PHFI), as well as Professor Clare Gilbert, who is the co- director of the international Centre for Eye Health and a leading global expert on retinopathy of prematurity.

CHAIRMAN: THE RT HON SIR JOHN MAJOR KG CH TRUSTEES: KAMALESH SHARMA, COMMONWEALTH SECRETARY-GENERAL | THE RT REVD & RT HON RICHARD CHARTRES KCVO | ALAN PARKER | THE RT HON SIR CHRISTOPHER GEIDT KCVO OBE | THE LORD KING OF LOTHBURY GBE | THE RT HON THE LORD ROBERTSON OF PORT ELLEN KT GCMG HON FRSE | THE RT HON THE BARONESS SCOTLAND OF ASTHAL QC | THE RT HON THE BARONESS HOGG OF KETTLETHORPE TREASURER: JOHN A SPENCE OBE DL

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Blindness from retinopathy of prematurity (ROP) is becoming increasingly common, particularly in middle income countries and cities in Asia as they expand services for preterm

Registered Charity in England and Wales (no: 1145640)

infants. A recent estimate suggests that 32,000 infants born preterm become blind or visually impaired from ROP each year (Blencowe et al, 20131), with the greatest number being in Asia.

Visual loss from ROP can largely be prevented by interventions at all the life cycle stages outlined in the Every Newborn Action Plan draft. For example, the risk of ROP can be reduced by antenatal corticosteroids before preterm delivery which improves survival and dependency on oxygen (an important risk factor for ROP), gentle resuscitation at birth, avoiding oxygen whenever possible, and by high quality neonatal care with the control of the known risk factors, using evidence based interventions. Severe, sight-saving ROP can be treated by laser to reduce blindness, requiring screening of infants at risk in neonatal units.

Although the document discusses impairment and morbidity in the body of the text, the introduction on the front page focuses on mortality. We would recommend that the action plan explains how impairment and disability care common after preterm birth, including blindness from retinopathy of prematurity, which has lifelong consequences for the child and their family. Much of this impairment can be prevented through high quality care and prompt and appropriate treatment. Section 11 could include reference to visual loss from retinopathy of prematurity, referencing Blencowe et al, 20131.

Reference is made throughout the document to preterm birth, but the body of the text could strengthen this, possibly by including a separate paragraph which highlights the importance of high quality neonatal care in increasing survival and reducing the risk of impairment. A few key issues could be highlighted such as antenatal corticosteroids before preterm delivery; gentle resuscitation at birth; control of sepsis; management of pain; adequate nutrition using mothers breast milk; judicious use of supplemental oxygen with monitoring to maintain optimal saturation levels; kangaroo care and so on. All these interventions are evidence based and we would be delighted to provide more information if appropriate.

Injudicious and prolonged use of oxygen is a known risk factor for retinopathy of prematurity and chronic lung disease. Wherever oxygen is mentioned in relation to preterm birth, the statements must be qualified by ‘careful’ or ‘judicious’ use of oxygen, with continuous saturation monitoring. For example, in Section 33 and Appendix 2.

More emphasis could be added in the Appendices on care of preterm infants and interventions which reduce morbidity. For example, in Appendix 2 antenatal corticosteroid administration before preterm birth could be added in the Pregnancy care section. In Appendix 2 a separate heading called ‘Care for EVERY preterm infant’ could be added, highlighting the key issues outlined above.

An important indicator for monitoring service delivery would include the proportion of intensive neonatal units with a program for the detection and treatment of retinopathy of prematurity in Appendix 3 (Policy and System).

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The Trust very much hopes that these important points are carefully considered for the final version of the Every Newborn Action Plan.

Should you require any further information please do not hesitate to contact me. Thank you in advance for considering our response to this very important document.

Dr Astrid Bonfield CBE Chief Executive The Queen Elizabeth Diamond Jubilee Trust

Reference 1. Blencowe, H; Lawn, JE: Vazquez, T; Fielder, A; Gilbert, C (2013) Preterm-associated visual impairment and estimates of retinopathy of prematurity at regional and global levels for 2010. Pediatric research, 74 Suppl 1. Pp. 35-49. ISSN 0031-3998 (Download from: http://researchonline.lshtm.ac.uk/1440256/)

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