We worked with Firvale Community Hub to speak to local parents and professionals. We found that whilst information and support is available, people's experiences of accessing it is mixed, and more needs to be done to ensure help is offered at the right time and in the right way.
What did we find?
These are the key findings from the report:
- Getting a diagnosis could be a challenging process. The news might be a shock to some parents and may affect their emotional wellbeing
- Parents had mixed experiences with support from their GP and the Regional Genetics Service
- Support provided in the community (e.g. by the Genetics Literacy Project) is an example of good practice in terms of cultural competency and language accessibility. However, professionals may have a limited awareness of its potential
- Overall, professionals felt confident providing support but highlighted some training needs in cultural awareness and sensitivity
- Overall, both parents and professionals felt well informed but information might not always reach people early on
- Parents had mixed experiences with how supportive the community was. There are some signs that views of younger generations may be changing
We have made recommendations to the people who commission and run local services to support families with recessive genetic conditions. These recommendations are about building the skills of professionals, strengthening the links between available support, and improving cultural competency and the accessibility of information.
We have asked commissioners how they plan to act on people's feedback, and will publish these responses when we receive them.