Making Waves – CARED, NHS Lothian

As part of the Making Waves series, find out how CARED has made an impact on self management in Scotland.

As winner of the 2018 Self Management Resource of the Year Award, we want to share with you the learning from CARED’s success in supporting self management in Scotland.

https://www.caredscotland.co.uk/ (this link will take you away from our website) is a website for parents and carers who are supporting a loved one who has recently been diagnosed with an eating disorder aged 25 or younger. CARED was developed by NHS Lothian Child and Adolescent Mental Health Service (CAMHS) Eating Disorder Development Team (EDDT) in partnership with parents, carers and young people who have been through and recovering from eating disorders. It was funded by the Scottish Government’s Technology Enabled Care Grant, is in partnership with Beat, the national eating disorder charity, and is part of the Scottish Mental Health Strategy (Action 22) for 2017-2027.

Parents are a key to identifying early symptoms of eating disorders and are essential in supporting their loved one’s recovery. It is recommended that the majority of young people with an eating disorder are treated in a community setting with Family Based Treatment being recommended as first line treatment for Anorexia Nervosa and Bulimia Nervosa in adolescents. This is a behavioural treatment that focuses on empowering parents to manage their child’s eating disorder, before a gradual transition of normal eating back to the young person. However, the stress associated with this caring role is substantial with parents and carers of those with an eating disorder reporting increased anxiety, depression and caregiver burden (including financial burden) which is exacerbated by a sense of isolation.

Carers have identified a need for reliable information about how to help their loved one recover from the illness and psycho education has been shown to reduce distress in caregivers. However, existing carer interventions mostly involve self-help books, or group workshops aligned with longer term adult treatment, require attendance at specific times e.g. timed online or face to face workshops, or costly online packages.

NHS Lothian CAMHS EDDT, in partnership with service users, launched CARED, an online platform, in February 2018. This resource is designed to enhance parental skills and knowledge within the first few weeks of diagnosis.

The idea for the resource came from NHS Lothian CAMHS eating disorder parent support group, where the most influential and highest rated sessions were routinely those where parents and carers discuss their own experiences in supporting their child, and where young people discuss their recovery process. Parents, carers and young people were key in the development of this resource and guided the development of the content from the start of the project, providing expertise in understanding what information would have helped them at this key point in their care and treatment. Parent and carers provided links to useful practical resources, books and websites that they found helpful, allowing the online resource to target information that they felt was needed, rather than what professionals assumed people would need. Service users were filmed providing information and reflections on their experiences, common traps they found themselves falling into and practical hints and tips. Young people from CAPS Advocacy and Beat Young Ambassadors who were in recovery from an eating disorder were also filmed talking about their own personal experiences to both provide insight but also a realistic account of the recovery process, while clearly stating that recovery is possible to instil hope in parents and carers.

Within NHS Lothian’s CAMH service, they have found this resource to be hugely beneficial. Understanding how overwhelming it can be for the family system when a young person becomes unwell with an eating disorder and that there is a range of complex, and sometimes inappropriate information online, which is difficult to sift through at a point of crisis. They also found that when stress levels are high, having a resource which people can access in their own time and go back to is particularly helpful to support retention of information. This resource allows them as clinicians to support parents and carers to quickly access safe, high quality information, at the point of need.

Staff at CAMHS feel strongly that this resource is a good example of how digital technology, with content driven by service users, can be aligned with evidence based treatment and support an early intervention approach which they know is key in supporting full recovery from eating disorders.

CARED is now a freely available website which can be accessed from PC’s, tablets and mobile phones. It is felt strongly that this resource is not only well aligned with evidence based treatment but also has the capacity to enhance the healthcare provided by clinicians. CARED strongly promotes the use of peer support to enhance self management for parents and carers, both to improve their wellbeing and mental health, but also that of their child via the promotion of an early intervention approach.