In 2011, The Sylvia Adams Charitable Trust contributed funding towards Alström Syndrome UK’s (ASUK) Asian Mentoring Scheme (AMS). This was a three-year project aimed at developing our understanding of the needs of South Asian families, raising awareness, increasing referrals and providing access to our specialist centres in Birmingham.
Statistics have shown that there is an increased risk of a child being born with a genetic condition within families where consanguineous marriages are customary. This was explored further within the Asian Mentoring Scheme and despite the fact that we were aware of how rare this condition was, it was felt that there may be families within the UK who had not received a diagnosis. It was also felt that some families appeared reluctant to contact support groups and engage with professionals as they were often very well supported within their own families and communities. In addition to this, families often turn to seek support from religious leaders, leading to spiritual support from their practicing religion. However, this prevented children and adults having access to specialist health care, advice and support.
This project enabled us to identify these families, provide access to medical care at a specialised multi-disciplinary clinic in Birmingham, work with the whole family to ensure everyone was aware of the risks of having further children with the condition so that they were able to make informed choices about future pregnancies and to support families to learn more about Alström Syndrome (AS) to enable them to effectively manage the condition.
We worked within South Asian Communities to develop a greater understanding of diversity, culture and beliefs, the barriers and challenges experienced and to raise awareness of Alström Syndrome. Significant changes were made to the services we provided and we believe we now offer a diverse and inclusive service to all families involved. Information is provided in an accessible format, ensuring that families receive the information they need about their condition and the reproductive options available to them. As consanguineous marriages are customary amongst many South Asian families, this information can benefit entire families.
The project was a great success and ASUK initially received an increase in referrals from South Asian families due to our awareness raising campaign. Families became more aware of genetics and made informed choices about the options available to them and other extended family members.
The number of South Asian families diagnosed with AS increased significantly throughout the duration of the AMS and The Sylvia Adam’s Charitable Trust has now committed to invest additional funds to widen the benefits of this project to other organisations. Kerry Leeson-Beevers who was involved in the design of the AMS and managed the project, will now lead a new and exciting project called Breaking down Barriers.
The aim of the project
Breaking down Barriers is aimed at facilitating patient organisations and support groups to join together and share examples of best practice. Thus developing 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. We will not only focus on South Asian families, although the information we gathered throughout the AMS may be useful to other organisations and will aid our understanding as we begin to work within different communities.
We believe that patient organisations and support groups are best placed to develop the skills needed to engage with families, particularly as they are generally the ones who have a greater understanding of the impact of living with a genetic condition.
Why is this project necessary?
There are a small number of projects around the UK focusing on working with families from diverse backgrounds. However, 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. We believe the success of the AMS was due to the fact that it was being delivered by people who were directly affected by the condition and therefore were able to demonstrate empathy and understanding due to their own experience of living and coping with AS.
We would like to expand this work further and include families from a range of diverse communities. Genetics is a complicated topic to understand and this project aims to identify the information and support available and will examine reasons as to why some families may not engage with health providers. Consanguinity will also be explored as part of this project and it is imperative that we do not frown upon consanguineous marriages. We will continue to stress that our primary aim is to provide families with the information they need about the reproductive choices available to enable them to make informed choices about future pregnancies and to raise important awareness of genetics.
Discussions regarding the project with patient organisations, support groups and umbrella organisations such as Genetic Alliance UK have been extremely positive and there is an awareness of the need to improve accessibility to services for minority communities and increase knowledge around genetics. 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 families living with genetic conditions.