Children who have Down syndrome are more vulnerable to serious infections and may present atypically. They may not ‘appear’ to be unwell, so checking with their parents/carers about what is usual for them is important.
At DSUK we are not medical experts, however, we are experts by experience, and we work with experts by profession in order to provide parents and family members with the information and support they need, as well as signposting to organisations who are experts in their given fields.
We have information on a range of health topics – including heart, bowels, infantile spasms, physical development, speech and language, audiology, eye care and more.
We are delighted to collaborate with hospitals, GP surgeries and maternity units across the UK to ensure expectant and new parents have access to ongoing support and contemporary accurate information regarding Down syndrome.
Lucienne is our Training Manager who can arrange training and provide resources to health care practitioners to ensure they understand the lived experience of having Down syndrome and realise the importance of their language and attitudes when speaking of Down syndrome.
We would be delighted to deliver training to you and can offer a bespoke session to meet your individual needs.
We also offer a closed forum for health visitors, midwives and other medical professionals working with our families, to access information, ask for advice etc.
We are passionate about ensuring expectant and new parents have access to the everyday reality of what it means to have Down syndrome in modern Britain. We have created a maternity pack that comprises of posters for wall displays, together with leaflets to pass onto expectant and new parents.
We would love to send you some resources to raise awareness and ensure parents and professionals have access to information and support.
