Your name
Your address
Your MPs name
Your MPs address
Date
Dear (Name of MP),
I am writing to you on behalf of (Patient Organisation).
On 7th September it is UK Newborn Screening Awareness Week and an ideal opportunity to raise the
importance of Newborn Screening in relation to inherited metabolic disorders.
In December 2014 once NHS England had approved funding, the UK National Screening Committee
(UK NSC) announced its recommendation that every newborn baby in England should be offered
screening for four additional disorders:

Homocystinuria (HCU)

Maple Syrup Urine Disease (MSUD)

Glutaric Aciduria type 1 (GA1)

Isovaleric Aciduria (IVA)
This means that from January 2015 the NHS Newborn Blood Spot Screening Programme in England
offers screening for a total of nine disorders.
Newborn babies are screened for 9 disorders in total in the UK. These are:

Sickle cell disease

Cystic Fibrosis

Congenital hypothyroidism (CH)

Phenylketonuria (PKU)

Medium -chain acy-Coa dehydrogenase deficiency (MCADD)

Maple syrup urine disease (MSUD)

Isovaleric acidaemia (IVA)

Glutaric aciduria type 1 (GA1)

Homocystinuria (pyridoxine unresponsive) (HCU)
Statistics tell us that about 1 in 2,000 babies born in the UK has sickle cell disease.
1 in 2,500 babies born in the UK has cystic fibrosis.
1 in 3,000 babies born in the UK has congenital hypothyroidism.
About 1 in 10,000 babies born in the UK has PKU or MCADD. The other conditions are rarer,
occurring in 1 in 100,000 to 150,000 babies.
Without treatment, babies with inherited metabolic diseases can become suddenly and seriously ill.
The diseases all have different symptoms. Depending on which one affects the baby, the condition
may be life threatening or cause severe developmental problems. The current screened for disorders
can all be treated with a carefully managed diet and, in some cases, medicines as well.
The benefits of screening are enormous. Early treatment can improve a baby’s health and prevent
severe disability, and even death. These benefits set out a pressing case for extending the UKs New
Born Screening Programme to include more disorders especially those disorders for which there are
treatments available. This means that babies who are diagnosed early can avoid severe illness or
death and can lead full lives
Some European countries, Australia and New Zealand screen babies for many more diseases
disorders at birth than the UK. In terms of our Newborn Screening Programme, the UK test screens
for significantly less disorders.
The process of recommending disorders to be considered for inclusion on the Newborn Screening
Programme is extremely thorough and can often take many years to complete sometimes with a
disappointing result after significant hard work and compelling evidence
To see the criteria that the UK National Screening Committee uses for deciding whether a disease
should be added to the Newborn Screening Panel and the diseases under review, please go to the
Public Health England National Screening Committee website www.screening.nhs.uk
I would like to hear your views on New Born screening for inherited metabolic disorders and in
particular what the government can and should do to help more babies and families benefit from
early diagnosis.
I look forward to hearing from you
Yours sincerely
(Name )
(Position )