Understanding People’s Experiences of Avoidant Restricted Food Intake Disorder Services and Support
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Healthwatch Blackburn with Darwen undertook engagement on Avoidant Restrictant Food Intake Disorder to understand parents' experience of accessing diagnosis, services and support for their children. They undertook research in a variety of ways, reaching 40 people.
A key message from parents was that they felt that the professionals they had come into contact with had little or no knowledge surrounding ARFID. As a result, incorrect advice has sometimes been given which can exacerbate the symptoms and have a detrimental impact on the child’s health. Professionals in primary care, secondary care and mental health should be provided with training surrounding ARFID.
The majority of parents first point of contact with professionals concerning ARFID is their GP or Health Visitor, but these have often been unsure of what course of action should be taken and where referrals need to be directed. This often results in referrals being rejected and repeating the same process.
Parents felt strongly that there was a lack of support for them in terms of helping to manage their child’s ARFID. Available information is scarce and conflicting advice often given. Services such as paediatric consultants, dieticians, Speech and Language Therapy and Occupational Therapy should run alongside more holistic approaches for example food and play therapy. Therapies such as Cognitive Behavioural Therapy and talking therapies should also be accessible. Services and treatment should be appropriate according to the needs of the child and where they are in the ARFID severity index.
Parents noted the struggles their child may face in a nursery or educational setting fitting in with their policies and practices around food and eating. This can have a serious impact on the child’s education and can create social barriers. Parents stated that education settings are often reluctant to make exceptions and alternative provisions for a child without an official diagnosis.
Accessible services within Lancashire and South Cumbria Travelling out of area to receive treatment and care for ARFID causes a significant impact to families logistically and financially. Having to travel a significant distance for lengthy in-patient stays affects the child, parents and siblings and family life.