Guidance urges better support for families and carers

The UK’s eating disorder charity Beat has launched new guidance encouraging healthcare providers to ensure better support for families of people with eating disorders, including by offering an assessment of their own mental health needs and offering access to peer-to-peer support programmes.

The NICE guidelines for eating disorders require service providers to ensure that carers are fully informed about their loved one’s illness and the treatment for it.  If fully involved, families and carers can help their loved one to recover faster and to ensure that they don’t relapse.

However, research by Beat finds families reporting that they currently do not receive adequate support in looking after a loved one with an illness that can consume their own energy and family life as well as the health of the sufferer. Sofia, a mother, described a situation faced by many parents: “We get no respite, whatsoever… I’ve been on pretty much 24/7 duty, looking after her for the last four or five years, really. We have had no respite from that, whatsoever and there’s nothing [to help us].” Another mother, Victoria, admitted that “both of us were really falling apart.”

The charity has also uncovered a lack of information about eating disorders provided to carers to help them understand the illnesses. One sister, Chloe, said “We were told “[Your sister] is anorexic, that’s her diagnosis… we weren’t told anything about the actual eating disorder itself, nothing about the other mental-health issues that come along with it, like the depression, OCD, or that sort of thing.” Sofia said that when her daughter “first had her major meltdowns and pretty much psychotic episodes, which were scary, I had no idea that that was something that happened with an eating disorder because there was no information given.”

Beat seeks to address this by calling on all healthcare providers to adopt eight best practice standards, encouraging them to:

1. Have a policy that ensures optimum involvement of and support for all carers as soon as a loved one starts treatment.
2. Train all service staff in the application of the policy and these standards with particular focus on the importance of carers as a resource for recovery.
3. Provide all carers with useful and comprehensive information about eating disorders when their loved one receives a diagnosis.
4. Offer all carers and siblings an assessment of their own needs when a loved one receives an eating disorder diagnosis, continue to monitor their wellbeing throughout the sufferer’s treatment and, where necessary, refer carers to specialist services.
5. Offer all carers options for peer-to-peer support.
6. Offer all carers opportunities to learn the necessary skills to provide optimum support for their loved ones.
7. Inform and engage carers when a loved one faces a transition between services and ensure that effective communication between both services and carers takes place.
8. Provide a mechanism by which carers’ input and feedback is sought and acted upon.

Beat’s Chief Executive Andrew Radford said “No family should have to go through the immense distress of an eating disorder alone, and their own health should not be put at risk.

“By issuing these standards, we are offering the NHS a practical framework to ensure that families and carers can play the best possible role in helping their loved one to get and stay well.”

Family Empowerment Guidance

Research