Eating Disorders Awareness Week (EDAW) is an annual campaign which highlights the realities of eating disorders as well as providing hope and support to those affected by eating disorders. This year EDAW is taking place from 26 February to 3 March.
This year, EDAW is shining a light on a condition that many will not have heard of, ARFID. ARFID stands for Avoidant/Restrictive Food Intake Disorder and is a condition that is characterised by a person avoiding certain types of food, having restricted intake in terms of the overall amount they eat, or both.
The North East and North Cumbria Provider Collaborative, which is made up from Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW) and Tees, Esk and Wear Valleys NHS Foundation Trust (TEWV) have developed a set of resources for the benefit of those living with ARFID or suspected ARFID and their carers across the region.
Resources have been co-produced with experts from other national services as well as those with lived experience. The reasons why someone may restrict their food intake varies between individuals however, they are usually associated with sensory-based food avoidance (such as the taste, smell or texture of foods), a phobia or fear (such as a fear of vomiting, choking or contamination), or a poor appetite and low interest in eating. In many cases, there can be a combination of different difficulties.
The resources include written content as well as videos and include information such as what is ARFID, understanding more and where to get help. As well as resources aimed for those affected by ARFID, a set of resources for use by clinical staff and professionals from all services in the North East and Cumbria footprint who are working with people with ARFID or suspected ARFID.
Clare Ellison, ARFID Project Lead and Advanced Eating Disorders Dietician for the NENC Provider Collaborative said: “Avoidant Restrictive Food Intake Disorder (ARFID) can have a significant negative impact on the lives of the individuals who live with it, and on the lives of their families. Those living with ARFID, or its effects, can often feel very worried, isolated, and unsure of where to turn to for reliable information and support. ARFID is also a relatively new eating disorder. This means that the knowledge and evidence base is continuing to grow and services for those with ARFID are continuing to be developed. This can add to the frustrations of those seeking help.”
“These webpages have been developed to respond to both of these needs. They have been created by our North East and North Cumbria Provider Collaborative and have brought together lots of other experts and services. We have also worked with many service users and carers with lived experience to support this work and to make sure we provide the best possible content.”
The webpages for patients and families living with ARFID across all ages are intended to provide current up-to-date information under easy to navigate subheadings. This means you can look at the information relative to you without being overwhelmed by it. There are lots of explanations included as well as signposting to other reliable sources of support.
A set of eight original resources have been co-created under the ‘ARFID simple suggestions series’ (for people of all ages) which included filming an eight module webinar series (for carers and families of children and young people). This small series has been created for busy parents with little spare time as each of the eight modules is broken down into smaller bite-size videos lasting between two and five minutes. This gives the user the freedom to choose which are relevant to them or provides them to return to any topics as often as needed.
The webpages for professionals and services are intended for all those seeing service users with ARFID/suspected ARFID across the North East and North Cumbria. It provides information to support clinicians with ongoing learning of ARFID as well for ongoing service development.
Clare continues: “We know that service users and families want to see pathways for ARFID assessment and treatment as quickly as possible. Whilst we continue to develop these as a region, we hope that these resources go some way to offer both our service users and our professionals with some helpful support and information.”
Resources for patients and families are available on Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust’s website at Support for Avoidant Restrictive Food Intake Disorder (ARFID) – Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (cntw.nhs.uk)
Resources for professionals and services are available on Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust’s website at Professional support for services working with Avoidant Restrictive Food Intake Disorder (ARFID) – Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (cntw.nhs.uk)
Further information can also be found at BEAT ARFID – Beat (beateatingdisorders.org.uk)