As part of the Breaking Down Barriers project, many organisations involved have produced a range of materials including literature and films to ensure their services and support is accessible for all.
Haemochromatosis UK are working with the Irish travelling community to raise awareness of genetic haemochromatosis. Diabetes, joint disease and liver disease are major health issues amongst Irish travellers and diagnosis and treatment of iron overload should help to tackle those directly.
In England there are a large number of Irish travellers; estimates vary from 50,000 – 120,000 people living in these communities. By their nature, this group has difficulty accessing healthcare services. For a traveller suffering with GH, the sometimes protracted diagnostic process AND the treatment programme (which requires regular clinic attendance) makes the patient pathway even more difficult.
This genetic condition runs in families and is particularly prevalent in the traveller community, due to population migration over the years.
Haemochromatosis UK have produced awareness materials tailored to the travelling community. The materials were designed by members of the traveller community and used images and plain language to explain genetic haemochromatosis simply. Click on the link below to download a copy and find further information.
Huntingtons Disease Assoiation produced a video to show the ways in which they can help families affected. The video is from the perspective of one of their Specialist Huntington’s Disease Advisers, and you see how Huntington’s can affect a whole family and what methods SHDA’s use to help and support families. This video helps people learn about outside organisations who can also offer information, support and advice.
You can find further information and view the video on their website below:
Check out this fantastic video from one of our members Metabolic Support UK.
This video is part of their Patient Insight Breaking Down Barriers Series, which explores the impact that a rare disorder can have on patients and families from the BAME community.
In this video, Mum Sabrina shares her stories and experiences of raising a child with an Inherited Metabolic Disorder within a BAME community.
Thank you Sabrina for sharing your story!
Videos, in different languages
Sickle Cell Society, have been able to produce videos for families, in French. So they can understand more about this condition in a easily accessible video in a language which is familiar to them.
Wolfram Syndrome UK have produced a short guide leaflet about Wolfram Syndrome which features both English and Urdu text throughout.
On their website, you can also listen to an audio version of this resource in both English and Urdu.
Please follow the link below to find out more and download your copy: