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

Sarah Kenrick is the Outreach Liaison Nurse running the new outreach service. She is a Registered Learning Disability Nurse with 29 years’ experience supporting children and adults with 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 the service, please contact Sarah Kenrick on s.kenrick@seeability.org, phone 07860 945856 or send a message on Facebook at www.facebook.com/RSB.SeeAbility.

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.