We live in a world where self-worth is defined by the number on a scales and our value in society is determined by how we look.
Consequently, eating disorders have soared in recent years with doctors reporting a ‘tsunami’ of cases during the pandemic.
Yet health services cannot keep up and we are in a national crisis, with limited inpatient beds, not enough community clinicians, and a backlog of referrals for people in urgent need of help.
One mother is desperate to rewrite the narrative and is spearheading a petition for change.
Becki Copley, whose own daughter struggled to get early intervention, is demanding an increase in funding for eating disorders treatment and has so far collated over 12,000 signatures.
Currently, the National Institute for Health and Care Excellence [NICE] guidelines state that body mass index [BMI] should only be one aspect of treatment – yet unfortunately this is not the case.
This means many professionals are using BMI alone to determine how ‘sick’ someone is, despite an eating disorder being so much more complex than how much someone weighs.
Speaking to InspoDaily about her personal experiences and what she hopes to achieve, Becki told us exactly how an overhaul in services could revolutionise ED recovery.
Becki said: “My own daughter was never ‘desperately’ underweight, according to MARSIPAN [Management of Really Sick Patients with Anorexia Nervosa] guidance. In fact, she had never been seen by an eating disorder team prior to diagnosis.
“We had raised our concerns and had been actively trying to manage her clearly disordered eating behaviours at home for months. But she ‘wasn’t sick enough’.”
Left untreated, Becki’s daughter Beth later collapsed at home and was rushed to hospital with multi-organ failure. Here she spent five weeks being medically stabilised before being transferred to an eating disorders unit, where she remained for two years.
However, while in care Beth only deteriorated, in both mental and physical health.
It was then that Becki decided to fight the doctors and the system to get her daughter discharged so that she could restore her at home.
Becki continued: “Whilst she is no longer physically compromised, her mental health bears the scars of her experiences and she still receives psychological therapy to overcome this – five years post discharge.
“A physical weight is just one aspect of an eating disorder. They are mental health conditions, and unless the sufferer receives appropriate therapy and support, increasing or decreasing someone’s weight does not fix the whole problem.
“They need psychological support to deal with the underlying feelings, the changes around their body, to deal with the trauma many experience, to deal with many underlying concerns they have.
“It is very common in a restrictive ED that someone’s mental health deteriorates when they become close to physically restored.”
Galvanised to help others going through similar experiences, Becki started a parent and carer support group and was stunned by the sheer numbers of those in crisis who joined, needing support, advice, and information that they could not access through services.
Now, she is directing her megaphone at government, with a new petition to try and influence the future of eating disorders treatment.
Opening up about her mission, Becki said she hopes to steer services towards a position where more people are allowed to recover properly before discharge.
Becki said: “We need early intervention to be just that, not allow people to deteriorate until they reach a ‘magic number’ for treatment.
“We need more inpatient beds, so people aren’t left in medical wards for months on end. Each treatment and care plan should be individualistic. Not generic.
“We need properly trained staff who understand. We need people who have actual lived experience to help support teams, both inpatient and in the community.”
She continued: “We need more therapy options available. We need it not to be time limited but based on the progress of the individual; once physically restored. We need to ditch the label of ‘treatment resistant’ when someone is still too unwell mentally or physically to engage fully.
“We need more information available to ground zero staff; GPs, schools, A&E, more in-depth training, info packs to give out to people who present to them, clear understanding of the pathways and warning signs and what early treatment should look like.”
Becki also wants to see help for families and carers, siblings, and marriage support, as eating disorders can “cripple the entire family unit not just the sufferer”.
In addition to this, Becki hopes an overlap service can be recognised as currently when someone hits 18, they are considered an adult and shipped off to adult services.
Becki said: “A ‘stop gap’ service for 18-25 would be much better for them. Keep parents and carers involved too. It is too common that the focus of treatment is on the sufferer, with carers excluded or not properly included. And yet they’re the ones dealing with this 24/7.
“They need to be kept involved. Evidence shows that successful recovery outcomes are dramatically increased with active involvement from parents/carers.”
Becki believes that fat phobia plays a huge part in the unsuccessful treatment of eating disorders and that as a society, we need to move away from praising people who have had huge weight losses especially those that take them into a state of physical danger.
She also longs to see a shift from judging someone who is overweight with the assumption they are greedy or lazy, when they have their own struggles and may need treatment too.
Becki said: “People are more than a number on the scales. We need to move away from commenting on people’s physical appearance entirely. Let’s talk about their personality. Their achievements. Their successes. Not what diet they’ve done, or what their dress size is.
“It is dangerous and unhelpful for so many. We can move away from it if media reporting takes a harder line and educates themselves about the risks their articles can pose.”
Becki added: “Recent articles about the tragic loss of Nikki Grahame included weights, BMI, images of her critically ill etc. Totally unnecessary and very triggering for many.
“Talk about the failings that led to her death. Talk about the changes that need to happen. Talk about who she was as a person. Don’t compromise people who are reading by risking their health mentioning weights. It doesn’t help or benefit anyone.”
When asked what her advice might be to anyone struggling now, Becki said she hopes that people will feel incentivised to get help and talk to someone.
Becki concluded: “Reach out. No matter how hard it is, no matter how desperate it feels, you deserve to recover. You deserve to be supported. You are not your eating disorder.
“It is treatable. You can recover. Telling someone is the first step. Be brave. Give yourself the same opportunity as you would tell your best friend to seek. You are worthy.”
To sign the petition, click here: Increase Funding For Eating Disorders.
For confidential advice, visit Beat or call their helpline 0808 801 0677 (from 9am–8pm during the week or 4pm–8pm on weekends and bank holidays).