Parents frequently tell us meeting new clinicians and professionals and having to go through the child’s health and well-being history time after time can be draining and frustrating and those health, social care and education professionals often do not have information relating to Batten disease before meeting them, turning to the internet for information which may contain disease profile descriptors that are no longer appropriate and out of date, causing more distress for the family.
To actively support family concerns the BDFA, have created a family folder containing information about all aspects of support and care, bespoke for each CLN type, so this family folder can be shown to key clinicians and professionals and families can keep up to date with contacts and appointments.
Our family Support team will go through this with each newly diagnosed family, and periodically as the child ages and develops different symptoms, and we will work with you to ensure the information in the folder is person centred, clear and relevant. We will also support you to understand the various documents detailed below that support you and your child, young person or adult if they need to access emergency health care
Our Family Folder is provided free to all Families – Contact the Family Support team to get yours.
It is also available to professionals at a cost of £25, you can order these in our online shop.
Whats Included?
- CLN (Batten) Leaflet
- What to tell the children (CLN3 or other Juvenile/adult onset subtypes)
- What to tell the children family story (CLN3 or other Juvenile/adult onset subtypes)
- Epilepsy
- The Ketogenic Diet System
- Movement Disorders in Batten disease
- Drooling or Hypersalivation
- PEG Feeding
- Sleep
- Puberty
- Constipation
- Dental Care
- Social Services
- Financial Support & Benefits
- Personal Budgets
- Relevant Legislation
- Physiotherapy and Hydrotherapy
- Speech & Language Occupational Therapy
- And much more