Save Babies Through Screening Foundation UK, A Resource on Newborn Screening

Patron Jason Manford       

 

Contacting your MP

You may feel that you would like to write to your MP, MSP (Member of Scottish Parliament) or MEP (Member of the European Parliament) about the extension of the Newborn Screening programme in the UK.

 

There is no doubt that the families of children affected and members of the public can make a real difference in raising the profile of newborn screening and the need to extend the Newborn Screening programme in the UK, by writing personally to their MP.  It is always advisable to write to your own Constituency MP.  With that in mind, there are several points to remember when writing a letter.

Tips on Writing Letters About Newborn Screening Issues

  • If you have a child with a disorder that could have been detected and treated earlier through newborn screening, include a photo of your child
  • Identify your child by name
  • Include your personal story
  • Identify yourself as an ordinary member of the public, a family member, a health professional or an advocate
  • Include a return address on the letter
  • Personalise the letter to show your depth of concern
  • Be positive and respectful. One of the largest mistakes a family can make in dealing with professionals is to appear to be attacking the person
  • Be clear, stating exactly what is wanted from your MP
  • Ask for a written response that states their position on the issue
  • Thank them for his/her time on the issue
  • Try and keep the letter to one page if possible
  • Show that you are familiar and knowledgeable on the subject
  • If necessary, you can email patroberts@savebabiesuk.org for help with your letter
  • Send a copy of the letter to the appropriate organisations involved in the issue
  • Send a 'thank you' when you receive a response
  • Encourage your friends and families to send letters too

Other websites containing helpful information on contacting your MP

Latest news

 

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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