This is something which resonates so loudly with parents of children with ASN and particularly those of us with children with Down’s Syndrome or a learning disability.

Trudy needs a thyroid test every year to make sure that her thyroid function is what it should be. Underactive and overactive thyroids are treatable, but they need to be detected first of all, and this is only done through a blood test. It is extremely difficult to take blood from someone who might not necessarily understand what the blood test is for, and ultimately why this lovely nurse is hurting her. We also can’t neglect the fact that a lot of children with Down’s Syndrome had difficult starts to life and have had many cannulas, injections and NHS staff in their lives, and sometimes not for good things.

Taking all this into account, it is understandable that a situation like a simple blood test could be frightening for a child with Down’s Syndrome or a learning disability. However, it is down to the knowledge, skills and attitude of the professionals involved: The knowledge that it might take longer to do this test, the skills to help Trudy understand the situation and the attitude to approach it with positivity, energy and optimism. Whilst we parents might be screaming inside that this has to go well (or these issues will not get detected, and this is a very real threat to their health and lives), the professionals have to be calm, multi-disciplinary and skilled.

This might seem a lot to ask but it comes with a huge benefit, to ensure the detection of thyroid issues and healthy lives of thousands of people with Down’s Syndrome, for just a little more time and a positive approach. Trudy had a longer appointment, the nurse gave her name and was not wearing NHS uniform (these things matter), Trudy knew what was happening on the day and she was not tricked into anything. The nurses were practical about what the blood test would feel like – “it’ll just be a scratch, Trudy and over very quickly”, positive about the outcome – “this will help you to stay healthy and have a healthy body”, and of a growth mindset – “you’re such a brave girl, show me your power pose, have you got this?”

I am overwhelmed by the understanding and skills of professionals like this and thought this story definitely deserves to be shared.