Families from diverse communities often experience barriers to accessing services for a variety of reasons. Breaking down Barriers is a new three-year project which aims to identify these issues and exploring possible areas for improvement.
We believe that patient organisations and support groups are best placed to develop the skills needed to engage with families, particularly as they often have a greater understanding of the impact of living with a genetic condition.
This is why the Breaking down Barriers project will focus on bringing together patient organisations and support groups to share examples of best practice and develop new guidelines to highlight effective ways to support families who are at increased risk of having children with a genetic condition but who are unlikely or unable to access mainstream services.
The project is being funded by The Sylvia Adams Charitable Trust and managed by the Alström Syndrome UK, who recently managed a successful project working within South Asian communities to increase diagnosis, improve support services and provide access to specialist multi-disciplinary clinics in Birmingham.
How will the project be delivered?
We are inviting interested patient organisations and support groups who provide support to families living with a genetic condition to complete an application form by 14 April 2016. We appreciate this is short notice so please contact us if you are interested but unable to send in an application form before this date.
An advisory group will then select ten organisations to take part in the three-year project.
Over the course of the project we will work closely with each organisation, examining their current practices and highlighting any barriers they feel are in place.
We will be arranging workshops, inviting relevant speakers, sharing findings from similar projects and providing plenty of opportunity for collaboration.
We can offer advice and support throughout the duration of the project and will regularly share information and link to additional resources that may prove beneficial to individual organisations.
Organisations will be asked to develop an action plan of improvement after the initial workshop and The Sylvia Adams Charitable Trust will provide £5,000 to each organisation to support their work. An additional £5,000 will be offered in year two to those organisations who are able to demonstrate continuous improvement.
We will be raising awareness of genetic conditions throughout the duration of the project and organisations may be asked to take part in media campaigns. We will also be working with communities and specific groups to raise awareness of the issues affecting people living with genetic conditions and exploring ways to break down barriers.
This is a national project and organisations throughout the UK are invited to apply.
Futher informaion on the project and an application form can be found on the Alström Syndrome UK wesbite, and for more information please contact Kerry Leson-Beevers on 01709 210151 / 07716135940 or email firstname.lastname@example.org