By Hope Virgo, Author, Founder of DumpTheScales and Secretariat for the APPG for eating disorders
Just over a month ago, the All-Party Parliamentary Group for Eating Disorders launched our latest report under the new Government “The Right to Health: people with eating disorders failed”. The report brings to attention the neglect that people affected by eating disorders are facing across the UK. People with eating disorders who are crying out for help but being denied evidence-based treatment. People with eating disorders who are being told they are untreatable, or too complex. We heard some harrowing stories of people unable to access treatment, from people with Binge Eating Disorder to ARFID to carers sharing the loss of their loved ones. But we also heard stories of hope, from people that had been struggling with an eating disorder for decades who had finally been given the right treatment and are now recovered. These stories of full recovery are yet more evidence that with length of illness and severity of illness do not stop a person recovering.
Since launching the report, it is no exaggeration to say that I have had thousands of people contact me asking to support this work, and thousands more who are being denied treatment, who are facing neglect from eating disorder services. These stories show the harrowing reality that whilst the report featured across the media for a week or so, that these stories are time limited to that week, or to a report launch, but happening every single day.
Michelle Jacques shared their story with us as part of the APPG Evidence sessions. Michelle is the Mum to a 5-year-old who has ARFID but because of his age, they are unable to get any support apart from a dietician who weighs him. Michelle told us that the times she had been to the GP to get support, her son was labelled a fussy eater. She told us that “his started off with the sensory sensitivities to food, he didn’t like anything with lumps, or bumps or strong smells and was very hesitant to touch food especially if it was wet or slimy. and as time went on it became incredibly difficult to introduce new foods. He was becoming more and more restrictive with what he ate. At my sons 2-year health check his sensory issues and eating difficulties meant he was referred to a paediatrics and a dietitian for investigations. We saw a dietitian quite quickly who started to discuss the usual fussy eating but, in my heart, I knew this was so much more. We followed there picky eating guidance and during the next appointment we discussed how nothing was working and how it had to be something deeper. The dietitian mentioned ARFID but due to my sons young age he stressed that there is very little help, especially for children under the age of 8. During this time, we moved house which meant we was discharged from care due to our postcode, putting us back at the bottom of the pile and A fight in my hands. After a lot of back and forth between local services and a huge strain on my mental health, we are finally back under the care of a paediatrician, dietitian. Whilst going through this incredibly stressful time, we made the decision as a family to have our son privately diagnosed with ARFID.”
Michelle’s story is one of many, which shows that eating disorder services are not fit for purpose in so many ways, and as a society we need to be making more noise to ensure that we can have adequate funding into services, and a cultural shift within services so that people can be given the chance of recovering.
We still live in a society where eating disorders are massively stigmatised and misunderstood. Where we still think of a white teenage underweight girl as the person who is affected without realising eating disorders really do present in so many different ways. Be that body size, age, gender, race, ethnicity.
One of our key recommendations in the APPG report, beyond the usual funding asks for research and services, is to invest and develop in a standalone strategy for eating disorders. A strategy which will focus on both early intervention and those who have lived with eating disorders for years and no longer “qualify for early intervention”. Despite various pieces of guidance that has been developed for eating disorders over the last decade, without a strategy, a cultural change within services, accountability and adequate funding to meet the demand we are going to keep seeing more people lose their lives to eating disorders.
I sometimes feel that I sound so negative when I write about the state of eating disorders at the moment and within this dialogue, we must hold onto hope that there is some good evidence based models out there, there are people accessing support, people recovering and going on to live. So in all of these discussions please hold on to hope that things can and do change.
How you can support the APPG for Eating Disorders this EDAW and beyond:
- Sign the #DumpTheScales petition here
- Save the date for our eating disorder march on 21 June in central London. Find out more here:
- Write to your local MP and the Prime Minister asking for their support with this work. You can find template letters here.
- Take a video of yourself saying “and the discrimination of those affected by eating disorders because everyone has the right to life/ treatment” and share it on your social media using the hashtags #EndEatingDisorders and #DumpTheScales
- Grab a piece of paper and write ‘I pledge to end eating disorders’ and take a selfie for social media. If you use the hashtags #EndEatingDisorders and #DumpTheScales we can share your posts!
