Save Babies UK

Patron Jason Manford

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To Celebrate the Saving of Children’s Lives through Newborn Screening Event at the Houses of Parliament 25th April 2012

To raise awareness of the important health benefits for children that the extension of the Newborn Screening programme can bring to the UK and the fact that some children are dying needlessly, the Patient Advocates for Newborn Screening Group (PANS) organised a successful newborn screening awareness event at the Terrace Pavilion, Westminster on 25th April 2012.

The PANS group was established by Save Babies UK in December 2010. It is a collaborative working group of a number of registered UK patient organisations representing children with inherited metabolic disorders - Save Babies UK (Krabbe’s Disease), CLIMB (Children Living with Inherited Metabolic Disease), the MPS Society (Mucopolysaccharide diseases), the British Trust for the Myelin Project and AGSD-UK (Pompe). The aim of the group is to influence the extension of the newborn screening programme in the UK in a sensible, well planned and well managed way, however to a much shorter timeframe than we have previously experienced.

At the event children who had been diagnosed through newborn screening for our current 5 disorders and their families, met with MPs, Members of the Lords, Health Select Committee members, clinicians, scientists and representatives from the European Union, to celebrate the fact that their lives had already been saved.

A children’s entertainer kept the children amused throughout the event with each child making a teddy bear or tiger, naming their bear/tiger and colouring a T-shirt for their bear/tiger to wear. The entertainer also made balloon animals, swords etc for each child. Additionally they each took home a party bag with small gifts – key rings, pencils, rubbers, balls etc. All the children said they’d had a lovely time with the 'Make a Bear' being voted a hit by everyone.

Following the opening speeches by the actress Miss Jenny Agutter and Mr Stuart Andrew MP for Pudsey, Miss Nicola Bramley who has PKU gave a very moving speech on how her immediate treatment allowed her to achieve many significant things in her life which would not have been possible without the detection of her disorder through newborn screening and diagnosis at birth. There was not a dry eye in the room after Nicola had completed her speech and she received tumultuous applause.

Across the UK we screen babies for only 5 inherited metabolic diseases at birth whilst other countries screen for many more. In 2012 the UK is 10 years behind the USA (now screening for between 30 and 60 disorders) and 5 years behind Australia & New Zealand (28 disorders) and some EU countries eg Austria (29), Spain(27), Iceland (26). Getting a new disorder accepted onto the UK screening programme is an extremely long process.

The Department of Health has announced a one year pilot from July 2012 to screen babies for a further 5 diseases across parts of the UK. However, the pilot only covers 60% of all babies born in the UK. 4 out of every 10 children born ie in some parts of England, in Scotland, Wales and Northern Ireland will not be screened. Whilst the lives of some babies will be saved, almost as many may be disabled or die because the whole of the UK is not being covered. Yet another postcode lottery but this one is putting newborn babies at risk. There is no decision by the DoH on what will happen at the end of the pilot or on how long it will take to roll this out across the whole of the UK. A further 5 disorders still falls well short of the number of disorders that some other countries are screening newborns for.

One of the outcomes from the April Westminster event is that PANS are now working with Mr Stuart Andrew and other selected MPs on developing a further strategy for securing Government and Department of Health commitment to extending the newborn screening programme.

Pat Roberts

Jenny Agutter, Mr Stuart Andrew MP and Nicola Bramley with some of the children cutting the cake

Pat Roberts with Dr Gerard Loeber of the International Society for Neonatal Screening

Jenny Agutter in discussion with family members

Pat Roberts with Lord Howe

Members of the PANS Group

Children enjoying the entertainment

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17/05/2013: Our Spring newsletter is out now! You can download it by clicking [here]

17/05/2013: Please support Nicola Balfour's fundraising efforts in the Prudential Ride London to Surrey 100 on August 4th 2013. Visit her Just Giving page [here]

08/04/2013: Zumbathon Fun Day, June 2nd 2013, The Birdbrook Tavern, Sturmer Road, CO9 4BB. Please join us and help raise money for SBUK. More details [here]

22/03/2013: Please support Team PP in the Great South Run on October 27th 2013, in memory of Miss Phoebe May Knibbs, who lost her life to Krabbes disease on February 23rd 2013. Visit the Just Giving page [here]

23/10/2012: Please support 12 year old Seth Morris in his fight for Newborn Screening. Click for more...

12/10/2012: Pat Roberts has contributed to an article published this month in the Journal of Community Genetics: Screening criteria: the need to deal with new developments and ethical issues in newborn metabolic screening. Alternatively read at the Journal of Community Genetics website here.

06/07/2012: Save Babies UK welcomes the DoH announcement to introduce a pilot for screening newborns for a further five disorders from July 2012. However this is too little and too late. The pilot will only cover 60% of babies born in the UK from July 2012. Almost as many children with diseases that could have been diagnosed and treated will go undetected, as those that the DoH say will be saved. Read more...

30/03/2012: Read more about the Saving of Lives Through Newborn Screening Celebratory Event, Westminster 25th April 2012 [here]

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