Downs syndrome documentaryI was moved to tears watching Sally Phillips’ excellent documentary, A World Without Down’s Syndrome? the other night. Partly because of Phillips’ obvious bond with her son (Oli, who has Down’s), partly because of the bravery shown by many other people from the Down’s community in the film, but mostly because of the striking lack of clear, balanced information about living with the condition.

Here’s the background. A recent advance in science has been lauded as a ‘breakthrough’ in Down’s Syndrome testing. It means that pregnant women can have a highly accurate, non-invasive prenatal test (NIPT), reducing the need for invasive amniocentesis, which carries a 1% risk of miscarriage. On the surface of it, this sounds wholly positive – but Phillips wants to know what the true repercussions will be.

How many parents will follow through with a pregnancy when faced with the reality that their unborn child will have Down’s, she wonders. A visit to Iceland acts as a revealing case study. Over the past five years, 100% of people have chosen to terminate for Down’s Syndrome. The result? People with the condition are increasingly uncommon and left feeling marginalised and badly integrated into Icelandic society.

The case of Iceland raises an interesting philosophical question, which is what this documentary focuses on for the most part: do we want to live in a world without Down’s Syndrome? Phillips herself acknowledges the anguish she felt when she first discovered Oli’s condition. But the short clips of Oli – and many others with Down’s – are enough to prove that this condition doesn’t necessarily hold you back from living a full, varied life and forming meaningful relationships.

So what has all this got to do with language and writing? Actually, a whole lot. As someone who has created advice and information content for a range of charities, I was particularly interested by a short scene where Philips scrutinised an NHS leaflet about Down’s Syndrome. Here’s what she observed:

“If you look at the leaflets the NHS hand out to mothers when they get the diagnosis, it does sound severe: ‘Complications include heart problems, gut problems, hearing problems, vision problems, thyroid problems, dementia.’ I think that just makes you frightened. A medical description only lists all the possible things that could go wrong, and it’s not then compared with all the things that could go wrong with a typical person.”

She’s right, and what she’s talking about here is context. Without putting the condition and all its possible symptoms into context, it will only ever appear negative. When people are struggling to take in news like this, the information you get is key. This is where charities can step in and provide much more useful information.

My top 5 tips on writing for health charities

1.       Medical information: it is necessary to know the possible side effects and how it can affect the body and mind, but it needs to be put in…

2.       Context: i.e. how many people live with the condition, what percentage suffer from the more severe side effects, and what percentage go on to mainstream education/a job/live independently? Hard facts help us understand the possibilities.

3.       Balanced information: painting a picture of the range of possibilities, from best-case scenario to worst-case scenario helps inform choice as people can properly consider whether they can cope with the worst-case.

4.       True accounts: one of the best ways to tell a story is to get it from those who know. If audio, video or images can be used, all the better.

5.       Signposting: don’t leave people hanging. They are almost always going to have unanswered questions and good information will tell them clearly where to go to get the answers – just make sure you are providing reputable sources.

As Philips says, “It’s such a sensitive time – how that news is delivered to you and crucially, what information is given, must have a bearing on what women decide to do next.”