We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.
We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.
As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.
We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.
The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:
- develop new treatments based on an individual’s biology and more precise diagnosis.
- provide better information on anticipating and preventing serious mental and physical health impacts.
- help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.
As part of this project we will:
- Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
- Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
- Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
- Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
- Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.
We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.
Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.
If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.
We’d also love to hear from you if you are the parent or carer of a child with a brain condition who is experiencing problems with their mental health. Please contact us on [email protected]