Help us ensure every newborn can have a pulse oximetry test

We passionately believe that every newborn should have the test that could help save their life. We are encouraging everyone to respond to this national consultation and help us ensure that this becomes a mandatory part of newborn testing in the UK.

Pulse Oximetry TestEvery year around 1,000 babies leave hospital with their congenital heart defect undetected, potentially putting their lives in danger.

Babies born with serious heart problems are at risk of disability or even death if not diagnosed before they fall into the early stages of heart failure. Tiny Tickers has now placed 86 pulse oximetry machines in NHS Trusts across the UK and counting. We believe that every newborn should have access to a pulse oximetry test as part of newborn testing. It is a simple, quick and painless test to ensure that no baby leaves hospital with an undetected heart defect.

What is Pulse Oximetry?

Pulse Oximetry testing helps to detect heart defects by measuring oxygen levels (oxygen saturation) in the blood. It uses a light sensor to assess the level of oxygen in the baby’s blood. The test is carried out using a pulse oximeter, a specialist machine that is used routinely throughout the world to measure the amount of oxygen in the blood. A small probe is wrapped around the baby’s hand and foot and connected to a small machine that measures the baby’s oxygen levels by shining a light through the skin.

This test takes a just a few moments, at no discomfort to the baby. Not every baby will be born displaying signs and symptoms of CHD, and with this machine many more life-threatening defects can be detected.

In the USA, where pulse oximetry screening is routine for all babies, a large study has reported that death from critical heart defects was reduced by one third in babies offered the screening compared with those who were not offered it.

Currently only around half of the babies born in the UK are offered this test – meaning around half will not be tested. Whether or not a baby has the test depends on the hospital of birth. If the NHS was to recommend this test as part of mandatory newborn screening, then all babies born in the UK would be offered it.

What do we need you to do?

The NHS has been considering routine pulse oximetry screening for critical heart defects in newborn babies born in the UK for a number of years. The UK National Screening Committee (UKNSC) has now launched a public consultation on its recommendation not to make the test mandatory. If that recommendation is passed, it means it will continue to be up to each individual NHS Trust whether or not to offer pulse oximetry testing – and that means the postcode lottery of whether a baby is offered the test will continue.

Further information about the UKNSC’s consultation is on a dedicated website. Please take a look at the consultation website, read the consultation cover note and complete the consultation comments form after reviewing the associated documents on the consultation website. And please return your form to: screening.evidence@nhs.net

This consultation is an opportunity for everyone, including parents and health professionals, to express their views and experiences with this test.

Take part in the consultation online – closing date 9 August 2019

Your views matter…please share your experiences with the NHS by responding to the consultation today.

 

Write to your MP

By asking your MP to intervene and urge the UKNSC to reconsider, you could play a vital role in helping us reverse the recommendation not to make pulse oximetry screening a mandatory newborn test.

 

You can copy and paste the text below or download our sample letter here. If you are the parent, family member or friend of a child born with CHD, be sure to include a paragraph about your experience.

You can find your MP’s contact details here.


Dear [insert your MP’s name here],

As one of your constituents, I am writing to you to express my concern at the National Screening Committee’s decision not to recommend pulse oximetry screening to all newborn babies in the UK.

Pulse oximetry screening is a safe, painless and simple test that has been shown, in research studies involving almost half a million babies, to consistently identify babies with life-threatening heart defects (critical congenital heart defects or CCHD) before they become seriously unwell.

Tiny Tickers is a national charity that exists to help those babies, their families, and the health professionals who care for them. I’m supporting their campaign to ensure that every newborn baby receives the test that could help save their life. Congenital heart disease is one of the biggest causes of death in infants, and around 1 in 125 babies has a heart problem.

The pulse oximetry test is safe, painless and takes less than five minutes to perform. Yet it has been proven to be successful in diagnosing serious heart conditions developed in the womb, and other important conditions in newborn babies such as infections and breathing problems, that can go undetected during antenatal ultrasound scans and initial examinations.

Parents in the UK face a postcode lottery when it comes to the availability of pulse oximetry screening, with only 40% of maternity units currently using this test. Around 6000 babies are born each year with a congenital heart defect. Less than half of these conditions are diagnosed before birth and routine examinations miss up to one third. Early identification can be life-saving.

The UK’s National Screening Committee has been considering routine pulse oximetry screening for critical heart defects in newborn babies for a number of years. However, the National Screening Committee has recently launched a public consultation (which runs until 9 August) on its decision not to offer pulse oximetry screening to all UK newborn babies.

I would therefore like to ask you, as my MP, to write to the National Screening Committee, asking them to reconsider their recommendation.

More information about pulse oximetry screening and the consultation can be found online on the University of Birmingham’s website (https://www.birmingham.ac.uk/research/activity/metabolism-systems/Pulse-oximetry-screening-saving-babies-lives.aspx#screening2.) or by visiting Tiny Tickers website: https://www.tinytickers.org/pulse-oximetry-public-consultation/

Yours sincerely,

[NB: Include your name and address]


Read more about Tommy’s story and why we firmly believe that pulse oximetry testing should be a mandatory part of newborn screening.

Also you can read more about the process on the University of Birmingham‘s website. We’re proud to be working alongside them to help ensure every newborn is offered the test that could help save their life.

Take part in the consultation online – closing date 9 August 2019