Feature

Improving communication between practitioners and people with Down syndrome


Neelima Choahan


23/10/2018 1:46:58 PM

Down Syndrome Australia Chief Executive Dr Ellen Skladzien spoke to newsGP about how health professionals can better support people with Down syndrome within the health system.

Down Syndrome Australia Chief Executive Dr Ellen Skladzien believes can be beneficial for GPs to communicate with people with Down syndrome more directly, rather than through family members or carers.
Down Syndrome Australia Chief Executive Dr Ellen Skladzien believes can be beneficial for GPs to communicate with people with Down syndrome more directly, rather than through family members or carers.

With increased availability of non-invasive prenatal screening, GPs are increasingly tasked with the responsibility of giving parents the results, whatever they may be.
 
Joelle Kelly, whose five-year-old daughter, Josee, was born with Down syndrome, said the encounter with the GP can vary for women – with some feeling supported, and others not at all.
 
‘Traditionally, the … obstetrician at the hospital would have given the diagnosis, now you actually have GPs on the frontline having to deliver that news to patient,’ Ms Kelly told newsGP.
 
‘I feel GPs have been put on the frontline of this whole screening process because of these prenatal screenings tests.’
 
Ms Kelly, who runs an online national support group, T21 Mum Australia – connecting mums of young children with Down syndrome across the country – believes there needs to be more consistency regarding the provision of information to parents.
 
‘I find it absurd that there are no guidelines around the consistency of information given to women, or even a simple flow chart of taking them through the screening process,’ she said.
 
‘Every woman I speak to seems to just follow a different path, and it just seems to be whoever they run into it. It’s a very mix-and-match experience that they have.’
 
The rate of Australian babies born with Down syndrome is one in 1000, According to Down Syndrome Australia.
 
Down Syndrome Australia Chief Executive Dr Ellen Skladzien said that while some people with Down syndrome have a ‘fabulous’ relationship with their GP, others have cited communication as an issue.
 
‘Sometimes doctors might not know how to best communicate with the person with Down syndrome. So instead of talking to the person with Down syndrome, they might only talk to the family member,’ Dr Skladzien told newsGP.
 
‘And that can … make the person with Down syndrome feel like they are not involved, they are not included.
 
‘So we have developed some resources for doctors around how to best communicate with the person with Down syndrome, providing some practical ideas on how to do it well.’
 
One of the most vital suggestions is involving the person with Down syndrome in the discussion.
 
‘There is also other things, in terms of providing visual information and finding out what is going to best for that person and how they like to communicate,’ Dr Skladzien said.
 
‘Sometimes using pictures or images, or showing people how things are going to be done can be really helpful. People with Down syndrome often do well with visual learning.
 
‘When we provide information to people we often use something called, Easyread, which is a combination of pictures and words that help people to understand information better.’
 
Dr Skladzien said ‘overshadowing’ is another problem that people with Down syndrome can face during consultation. This is a situation in which a practitioner focuses solely on the genetic condition and fails to address other issues.


‘Sometimes the doctor may focus so much on Down syndrome that they think any symptoms that come up are related to Down syndrome,’ Dr Skladzien said.
 
‘So they might not pick up on the fact that the person is actually depressed or having a mental health concern, and they might think it has to do with the intellectual disability or Down syndrome instead.
 
‘So families … often feel frustrated that the doctor might take a “wait and see” approach or might not be as proactive about addressing concerns of the family because they feel it is something to do with the person having Down syndrome.’
 
Dr Skladzien believes it is beneficial for GPs to listen to the family’s concern and realise Down syndrome is only one part of the picture for any person.
 
‘A person has Down syndrome, but they might also have anxiety or they might also have thyroid disease,’ Dr Skladzien said.
 
‘There is a bigger picture that needs to be looked at. It is important not to just look at Down syndrome.’
 
According to Dr Skladzien, some medical practitioners may not have the most up-to-date views of Down syndrome.
 
‘Doctors who might not be aware of the potential of people who have an intellectual disability,’ she said said.
 
‘This relates a lot to the prenatal screening, where sometimes doctors are telling families that the child will never go to school, be able to ride a bike … when actually we know that people with Down syndrome go to school, lots have jobs.
 
‘There is a good quality of life that people experience.’
 
Ms Kelly said women need a consistent, unbiased message from their GPs, and a ‘cooling off’ period to make any decisions following a test that indicates an unborn child may have Down syndrome.
 
Down Syndrome Australia is also pushing for change of terminology, replacing the word ‘risk’ with ‘the chance of a diagnosis’.
 
‘That terminology – “You have got a one-in-two risk”, and “You are a high-risk pregnancy. Now you have to go to go to a high-risk clinic” – it’s just so negative,’ Ms Kelly said.
 
‘If screening was put in place for optimal care for the baby and the mother, then I think everything would be different. But it definitely hasn’t been set up in Australia, I don’t believe, to support the clinical side of the pregnancy.
 
‘They are just worried whether you are keeping your child or not. They are not actually putting any measures in to support your pregnancy.’



Down Syndrome Down Syndrome Australia prenatal screening





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