Scholarship Stories: SeeAbility Provides Juvenile CLN3 (Batten) Disease Outreach
Building on the wealth of experience at their world-leading specialist residential service Heather House, SeeAbility has launched a unique outreach service across the UK with the support of Burdett Trust.
Available to all families, professionals and caregivers supporting someone with juvenile CLN3 (Batten) disease, the disease is so rare that most health and social care professionals will have little, if any; experience of what is required to support a family in all aspects of their lives.
The outreach service focuses on support and advice to family and friends. Essential to this is an initial assessment and detailed report document which families can share with clinicians, teachers and associated practitioners. Ongoing contact is both planned and in response to crisis situations through phone, email or video link. Ideally each family would have a face-to-face visit where possible with the Batten Disease Family Association (BDFA) support team.
Through the programme we provide bespoke guidance for specific needs such as behaviour, continence, sleep patterns, eating and drinking, capacity and best interest processes – as well as end of life support.
The outreach nurse has already successfully provided support at local levels with some core teams to develop their skills and knowledge, enabling the disease pathway to be more effectively managed and understood.
For further details about the outreach programme please contact SeeAbility’s Outreach Liaison Nurse, Sarah Kenrick.
Image: ‘Lily is supported by SeeAbility at Heather House’.