01709210151 / 07716135940 kerry.leeson@alstrom.org.uk

Aims

Breaking Down Barriers The aim of the project

Breaking Down Barriers aims to:

  • facilitate patient organisations and support groups to join together and share examples of best practice
  • develop new guidelines to highlight effective ways to support families at increased risk of having a child with a genetic disorder
  • address difficulties and inequalities experienced by families in accessing mainstream services

At Breaking Down Barriers, we believe that patient organisations and support groups have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population. The purpose of this project is to strengthen the ability of patient organisations and support groups to develop supportive and inclusive services for individuals and families affected by genetic disorders.

Why is this project necessary?

There are a small number of projects around the UK focusing on working with families from diverse backgrounds. Many of these are being driven by health professionals and while they may be benefiting small groups of people in specific locations, there is a clear need for a national project to benefit larger numbers of people and communities and to develop new policies and practices. Breaking Down Barriers can provide a model of good practice where by patient organisations and support groups can demonstrate a key role  in providing effective support to families affected by genetic disorders.

Research on genetic service delivery and the patient and family experience shows that patients and families affected by genetic disorders continue to have problems accessing services. It is well documented that this is particularly so for those from minority ethnic groups and those with close cousin marriage. Providing accessible information about genetics to individuals and families is crucial in developing understanding about specific conditions and in ensuring people are aware of the reproductive choices available to enable them to make informed choices about future pregnancies.

Breaking Down Barriers has been discussed extensively with patients, patient organisations, support groups and health professionals and the project has received a very positive response. There is a shared understanding of the need to work in collaboration to help improve awareness of genetics and improve the accessibility to mainstream services. We are confident that the enthusiasm that has already been demonstrated towards this project will help us to achieve our aims and will provide crucial benefit to individuals and families living with genetic disorders.