Down’s Syndrome Test Campaign – Success!

January 15, 2016 at 1:13 pm / by

Tulip at Royal Free

I am delighted to hear that the National Screening Committee has recommended that the non-invasive blood test for Down’s syndrome should be offered to pregnant women on the NHS. This is a brilliant decision and one that should be celebrated by mothers-to-be and their families across the country.

The purpose of this campaign was to remove unnecessary risk of miscarriage to mothers wishing to know the health of their baby. People with Down’s Syndrome go on to live full and extraordinary lives of great happiness and achievement. Allowing their parents to plan for their early years is a vital part of such a reality.

When I found out that my daughter had a risk of Down’s Syndrome, like many expecting mothers, I was faced with the choice of a test that carries a risk of miscarriage, or paying the £400 bill to safely establish my baby’s health in a non-invasive, risk free test. Where possible, advances in healthcare should be enjoyed universally and access to treatment should not be a matter of financial privilege.

Since my test, I have lobbied the Government to provide the test universally on the NHS. I raised this matter twice with the Parliamentary under Secretary of State for Health, Ben Gummer, when I met with him in October and again in Health Questions in January. You can see our full exchange here.

I also wrote to the Health Secretary directly, and asked questions of his Department. Though this matter coincided with a deeply personal experience in my life, I am relieved that mothers across the country will now have access to this safer test, regardless of wealth.

Campaign timeline – Access for all

5 November – Meeting with Ben Gummer MP

Tulip Siddiq MP Ben Gummer MP

In November I met with Ben Gummer MP and raised concerns about the ‘two-tier’ testing system, and my own personal experience of pregnancy.

17 December – Parliamentary questions

To ask the Secretary of State for Health, how many NHS patients have had miscarriages as a result of the amniocentesis test in the last three years.

To ask the Secretary of State for Health, how many NHS patients gave birth to children with Down’s syndrome in each of the last three years; and how many such patients had had an amniocentesis test.

To ask the Secretary of State for Health, if he will make an estimate of the cost of introducing non-invasive prenatal testing for Down’s syndrome to all NHS hospitals in the UK.

– 18 December – Letter to Jeremy Hunt – Secretary of State for Health

Letter to Jeremy Hunt MP
(Click to read PDF)

5 January 2016 – Health Questions in the House of Commons

7 January 2016 – Media coverage
Newspapers (Camden New JournalPregnant MP Tulip Siddiq demands free Down’s syndrome screening on NHS after feeling forced to choose private provider for test) covered my question to Jeremy Hunt MP and Ben Gummer MP in the House of Commons, asking why access to this test was limited to only those who could afford to go private.

The Sunday Times reported on my campaign, as well as the fact that NHS experts were looking in to the possibility of increasing access to the test – NHS could offer new Down’s test

15 January 2016 – Victory!
– UK National Screening Committee recommends that the safer Down’s Syndrome test be made available in hospitals on the NHS