Summary of Project 

This is an evaluation of the support provided for families and what they need. The results will enable the BDFA to be more informative to families and professionals from the information gathered as well as the BDFA, families and collaborating professionals being able to plan and suggest improvements in services in a more focused and balanced way. The increased awareness of these conditions amongst professionals, together with the clear informative best practice guidelines created, should result in reduced delays in time to diagnosis and also increase the child’s and family’s satisfaction with care provision. The project was funded by a grant to the BDFA from the Jeans for Genes Campaign.

Update

The final substantive report has now been presented to the BDFA. Dr. Scambler set out to answer the question ‘Is the current level of care and support given to children and young people with Batten disease sufficient to meet their needs and the needs of their families and carers?’. An audit of existing services was carried out through questionnaires and interviews. The results have been analysed and ten targets have been identified. We are pleased to note that some of the targets are already ‘works in progress’. This is a significant piece of work which the BDFA Support Team is working on to follow-up on the recommendations. We are confident that it will help improve the care and support of children and young people with Batten disease and in doing so, will improve their quality of life and the lives of their parents and carers.

For more information on the project’s findings please contact us at the BDFA on info@bdfa-uk.org.uk.  Download a copy of the Summary.