Listen to me I have a Voice

Rachel highlights some of the key findings from Down's Syndrome Scotland's recent report.

Down’s Syndrome Scotland (DSS) recently published a new report ‘Listen to me, I have a voice’ (this link will take you away from our website) on the experiences of its members with healthcare professionals and services. More than 400 members shared their thoughts with us, including 201 adults with Down’s syndrome (Ds).

Many respondents reported that healthcare professionals have been helpful and that they have access to good services. However findings also highlight inconsistent levels of care across the country and too many families are still facing negative attitudes and poor communication from healthcare professionals. The report also raises important questions about the provision of recommended health checks for people with Ds.

Below are some of the key findings:

Knowledge of Ds

It comes as no surprise that members who reported good experiences have access to kind and respectful professionals who understand what it means to have Ds. Respondents also praise staff who truly listen to their concerns and take time to explain procedures. The role of multidisciplinary teams in reviewing a patient’s needs is also seen as an example of best practice. Adults with Ds are overall happy with services however they would like more time to talk to doctors/nurses; longer appointments would help them and their parents/carers feel better supported by healthcare professionals.

Health checks

Our research reveals a gap in the provision of recommended health checks for people with Ds. Feedback indicates that half of the parents caring for an adult with Ds are unaware of required health checks. DSS is of the view that services need to be much more proactive to arrange for health checks to take place and provide families with relevant information. Even though respondents find that services in their area may be helpful, the report clearly highlights that not all people with Ds receive the highest standard of care that would help improve their quality of life.

People First Language

Moreover evidence show that too many people still face poor communication and negative attitudes from some professionals. Parents are deeply hurt by professionals referring to their child as ‘a Down’s baby’ for example. The report emphasises the importance of language and argues that all staff should practice ‘People First Language’. Professionals should also stop labelling people with Ds and adapt their methods of assessment to match the cognitive abilities of each patient.

Lack of support at point of diagnosis

Finally some parents also chose to share their experiences of ante- and/or post-natal care. Most comments revealed very poor attitudes from professionals with expectant mothers feeling pushed towards having a termination and a lack of respect towards patients’ decisions. Feedback also demonstrates a clear lack of support for expectant/new parents at the point of diagnosis. As a result DSS is asking for an urgent review of pregnancy screening practice and of the support provided to parents whose baby is diagnosed with Ds either pre- or post-birth.

The Scottish Government is working towards improving the quality of life of people with learning disabilities through strategies like The Keys to Life or A Fairer Scotland for Disabled People. Nonetheless we believe that more attention has to be paid to improved staff knowledge and practice. Children and adults with Ds will only enjoy the highest attainable standards of health when words on paper are actually implemented on the ground. The 18 recommendations found in the report would help ensure that all families are treated with dignity and respect across Scotland.

Access Down’s Syndrome Scotland report – ‘Listen to me, I have a voice’ (This link will take you away from our website)

Rachel@dsscotland.org.uk

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