Building on the wealth of experience at our world-leading specialist residential service, Heather House, we have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone with juvenile CLN3 (Batten) disease.

Sarah Kenrick is the Outreach Liaison Nurse running our new outreach service. She is a Registered Learning Disability Nurse with 29 years’ experience supporting children and adults with juvenile CLN3 (Batten) disease. Sarah was previously Manager of Heather House and in her 20 years at the service, she provided ad hoc outreach support and advice to many families and professionals not just in the UK, but around the world.

The outreach service provided by Sarah will focus on:

  • Support and advice to family and friends – Providing contact on a planned basis through phone, email or video link. Providing a sustainable emergency contact for family members when they have concerns or are facing a crisis
  • Carrying out assessments and providing advice and support for associated professional practitioners – A face-to-face visit with each family initially and where possible joining up with the Batten Disease Family Association (BDFA) support team
  • Bespoke guidance for specific needs – Guidance on a range of topics, including behaviour, continence, sleep patterns, eating and drinking, capacity and best interests processes, transition from children’s to adult services, epilepsy, loss of skills and end of life support
  • Supporting skills development of the multi-disciplinary team (MDT) – Engaging with all associated professionals and practitioners involved in education, health and social services. Supporting each person’s local MDT to develop their skills and knowledge, enabling the disease pathway to be more effectively managed and understood 
  • Direct crisis intervention and support – Providing crisis support with the agreement of the local authority concerned, seeking funding for this as necessary, as well as supporting bespoke assessments, training and planning

If you would like to hear more about our service, please contact Sarah Kenrick on [email protected] or phone 07860 945856.

You can also join our private Facebook supportive forum for professionals, family and friends to get professional advice from a leading specialist. Here you can ask questions, find support and share knowledge about juvenile CLN3 (Batten) disease, as well as connect with other people supporting someone with this disease. Click here to request to join the group

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We have written some guidance for families, carers and associated professionals. You can download these below and if you have any more questions, please feel free to contact Sarah on the details above.

Physiotherapy for children and adults living with juvenile CLN3 (Batten) disease

Medicines and supportive strategies for the management of epilepsy in the mid and later stages of juvenile CLN3 (Batten) disease

Supporting anxiety, panic attacks, hallucinations and night terrors in juvenile CLN3 (Batten) disease