Using Telehealthcare in the Voluntary Sector Telehealth Champions Using Telehealthcare in the Voluntary Sector Andy Wynd Chief Executive Scottish Spina Bifida Association Spring Meeting March 2011

Context Scotland wide organisation Supporting over 3000 children, young people and adults with spina bifida, hydrocephalus or related conditions Wide range of services including Helpline Family Support, Parents and Children's Groups Young Adult Groups SEA Change Project - Befriending Healthy Living and Self Management Low incidence condition. National Specialist organisation

The Dan Young Building, Cumbernauld

Telehealth and Healthcare Suite 2 Tandberg Kits, one mobile using ISDN

What’s important for patients Choice Control Independence

Embedding Telehealthcare into practice Don’t sell the kit - Sell the benefit Starting from the patient’s perspective What are the challenges Most patients with spina bifida or hydrocephalus will have frequent contact with health professionals Not everyone is comfortable with ICT. How comfortable are patients in adapting to change in service delivery? Specialist Paediatric Support and Intervention may be offered a considerable distance from patients home Follow-up clinics require significant journey time Clinical reviews can cause similar issues, if hospital based.

Taking it slowly Trial a few patients and parents linking in to “known” consultants using the VC kit Benbecula to DYG for spina bifida combined clinic review DYB to Aberdeen for Urology review Dumfries to DYB for Paediatric review DYB to RHSC Glasgow for advice support

Learning from experience The younger the patient, the more comfortable with technology Picking up suggestions from patients to “push the boat out” Can we use this technology from home? Pilot indicated 1 to 2 minutes for children/families to fee comfortable with technology on live links

SCT Care at Home Project Use of Laptop, HD camera and home broadband to offer a home based service Pilot patient in Orkney and patient in Wigtown Benefits not just in terms of travel but also reassurance to family. Pivotal in clinical decision making Trialled with parents who were computer literate to iron out potential difficulties and test home broadband capabilities.

Some spin offs! Use of Telehealthcare technology to improve quality of life. Remote and rural worker using VC as a means of supporting young adults in a safe and secure environment. Young adults in Aberdeen linking via VC to “join” the Youth Group at the DYB Support and Supervision of remote and rural staff Education and Training – Digital Stories Use of SMS, Facebook, Twitter, secure forum on own website, Fitness Project uses video footage to reinforce exercises through individualised training programme for participants

Using Telehealthcare in the Voluntary Sector Telehealth Champions Using Telehealthcare in the Voluntary Sector Andy Wynd Chief Executive Scottish Spina Bifida Association Spring Meeting March 2011