Kevan Christie: Forget the labels, it's the people who count

Last week's report from Down's Syndrome Scotland painted a depressing picture of the level of care for people with the condition that showed we haven't come far from the bad old days of the 1970s when labelling was the norm.

Correct communication is vital when health care workers are discussing Down's syndrome.
Correct communication is vital when health care workers are discussing Down's syndrome.

Among the points raised were first-hand accounts of “horror stories” in the form of negative attitudes of some health professionals towards people with Down’s syndrome (Ds) and their families.

Chief among the culprits were midwives, health visitors, nurses and consultants during ante and post-natal care, with one consultant telling parents that their son “would be very loving but would not achieve anything – so don’t bother trying mainstream education”.

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Others include a health visitor commenting that this was “my first Down’s baby” and a doctor who told a mother she “must have the patience of a saint” when he was misbehaving.

These attitudes, no doubt displayed by a minority, enhance the feeling that people with Ds somehow exist outside mainstream society in a state of perpetual happiness.

The happy myth was put to bed by Natasha Connon, a member of Down’s Syndrome Scotland, who starred in a television advert as part of their awareness week that showed her laughing in the park with a friend then crying on the stairs. The message being that those with Ds live normal lives like anyone else.

Key findings from the study highlighted the inconsistent provision of health checks, with more than 25 per cent of children in Scotland with Ds not being seen every year and 50 per cent of parents/carers of an adult with Ds not even aware of the requirement for annual health checks.

According to parents/carers’ feedback, as children grow up vital checks are more likely to be missed because of a change in healthcare staff or a move to a new local authority which can result in details being “lost in the system”.

People with Ds can suffer a range of issues related to their condition, with the most common being hearing and eye issues, heart problems and dementia. GPs and health professsionals need to be more proactive in educating families about these health conditions and provide regular checks to catch potential issues early.

This means important checks such as blood tests for thyroid conditions or eye tests never take place thus demonstrating a lack of consistency in the provision of checks across different health boards. One parent asked for thyroid checks at their GP surgery on more than one occasion over the past couple of years – to be told they were still finalising the details.

Down’s Syndrome Scotland are now calling on the Scottish Government to ensure healthcare professionals inform parents of health conditions associated with Ds and annual health checks as and when required as outlined by Down’s Syndrome Medical Interest Group and the Royal College of General Practitioners. They also want to see NHS boards book annual health checks in advance with reminders sent to patient and carer closer to the time. As regards communication, NHS Scotland has to acknowledge and confront the use of language with its workforce and ensure all healthcare professionals practice “People First” language putting the basic human rights of those with Ds to the forefront.

A review of workforce training and better education will go a long way to treating patients and families with respect.