Dump The Scales March, 2024

Last weekend our second #DumpTheScales March took place in London. I have taken some time to process both the day and the work leading up to it. I had wanted to write a reflective piece earlier in the week, but like many others who were at the event it has taken some time to manage the emotional and physical fatigue that followed, let alone find the words to do justice to the day.?

It has been absolutely extraordinary seeing so many people share photos, videos, placards and comments from those who attended or have been supporting the campaign in other ways - I cannot understate just how much this has been appreciated. Equally, this is all very bittersweet. The passion for change was evident and the sense of community between those at the march was truly beautiful, but I also know that for the majority this passion has been driven from a place of suffering. There was so much solidarity, but also so many shared experiences of being failed by the system, the lack of funding, inaccessible treatment, weight-stigma, BMI bias, racial bias and so many other barriers to getting effective and efficient treatment. There were of course positive stories too, and these experiences should and need to be the standard. It was also wonderful to hear from professionals both within Eating Disorder Services and Governmental roles who are fighting for change, using their voices to demand more, to demand better for all those impacted by Eating Disorders. Ultimately however, we know too many professionals' hands are tied by severe underfunding and lack of resources, impacting their ability to provide the adequate treatment needed, rationing care and excluding those that don’t fit into specific boxes - in most cases of course this says more about the impact of austerity than individual professionals and I do want to appreciate the incredible work people are doing in the field working exceptionally hard in difficult circumstances.

Whilst NICE guidelines clearly state that single measures such as an individual's BMI should not be used to determine whether or not treatment is offered for an Eating Disorder, we know that for so many this has not been their experience, and it is not something that is being correctly implemented across the country and consequently people are being denied support, ultimately putting lives at risk. The funding simply does not meet the current demand for Eating Disorder care, and this has resulted in a postcode lottery when it comes to accessing treatment. We are so often reminded of just how vital early-intervention is across the health sector for optimal outcomes and yet for many people with Eating Disorders this critical early-intervention is denied based on BMI, an arbitrary number which is inherently racist, sexist and ableist and simply cannot accurately determine an individual's health status, it is simply a barrier to timely and effective treatment. Eating Disorders are not weight disorders and yet too often we are still seeing an individual's BMI being used to measure severity and whether or not support is offered. Eating Disorders do not discriminate, but access to treatment does and there needs to be systemic change, whilst tackling both conscious and unconscious bias that creates barriers, especially for those who are historically underrepresented in Eating Disorder research and treatment.?

Ultimately, this is what the day all comes back to, the injustice and inequity of Eating Disorder care. Everyone who attended, both in person or virtually all had their own stories to tell, some inspired hope, others were utterly heartbreaking, sparking anger and frustration, knowing they deserved better. We were fortunate to be joined by a variety of speakers on the day, all of whom had different connections to the campaign, whether that be lived-experience or professional experience.?

The day began with an opening speech from the incredible founder of #DumpTheScales, Hope Virgo , highlighting the importance of the campaign, wider advocacy for improved support for all those with Eating Disorders and touched upon her own journey with anorexia and the frustration that she feels towards the ‘Palliative Care’ pathway being used for so many.?

Rachael Downie-Drury joined us for the second year to host the speeches, and also shared her own lived experience of anorexia, fighting for change for her 10 week old week daughter to protect her from the life she experienced, her younger self and for all those impacted by Eating Disorders. Rachael had said that sharing her personal experience is not something she had spoken about publicly before, and was truly beautiful that she felt able to on the day, surrounded by an incredibly supportive group of individuals.?

We heard from John McDonnell MP and Baroness Kate Parminter who have both been tirelessly fighting and supporting this campaign within parliament over the last few years, both sharing their reasons for supporting the campaign and what they have already done and pledged to do within their governmental roles to create long-lasting change in the way those with Eating Disorders are treated. Baroness Kate Parminter also spoke about the difficulty of being a loved one of someone with an Eating Disorder and the desperation of wanting to be able to make things better for her daughter.

Dr Rosena Allin-Khan MP had a unique insight, in that she is both an acting MP and previous Shadow Minister for Mental Health, and an A&E doctor. Dr Rosena spoke about the changes that need to happen particularly when it comes to long-waiting lists, resulting in huge treatment gaps between onset and start of treatment, we know early-intervention is critical. Dr Rosena has also spoken about the increase in patients that she is seeing growing numbers of individuals with Eating Disorders through her A&E.?

Dr Chukwuemeka Nwuba and Dr Agnes Ayton both joined to share their perspective of treating those with Eating Disorders, and what they are seeing as medical professionals, the barriers faced and what they hope to see for the future. Both highlighted the dangers of long-wait lists putting lives at risk, alongside a sharp rise in hospital admissions for Eating Disorders.??They highlighted how grateful they were to those in governmental roles in attendance at the march today for all the support they have shown the campaign, and the work they are doing in parliament alongside them.

We were incredibly honoured to be joined by six individuals who shared their personal stories and used their voices to demand better.?

James Downs shared his experience with both anorexia and bulimia and advocated for the urgent need to change outdated and inaccurate narratives around Eating Disorders, and the culture of denial and harmful attitudes that still exists across policy, healthcare and society today.?James ended on a very poignant note that really resonated with my experience and undoubtably many others too. "We need now to build the structures that mean people don’t have to hope for treatment, they will know that it will be there, for as long as it takes. We need to provide care that people know, with confidence, will help, so is worth engaging with. We need not just to have faith, but to create something we can have faith in."

Nikki Mattocks shared her experience with bulimia, body dysmorphic disorder and binge eating disorder. Nikki discussed the impact that abuse and trauma had on her relationship with her body and food, to only being denied support when she first reached out as a result of weight-stigma. Nikki is fighting to change the narrative around Eating Disorders, distancing from the notion that they are a choice, or have a look.?

Marilyn Okoro OLY shared her experience with bulimia and the complexities that came with this whilst competing as an elite athlete. Marilyn spoke about the harmful messaging she received whilst training for the olympics, being told to lose weight for her performance, advice that came from a place of extreme ignorance and could have not only jeopardised her career but ultimately her life. Marilyn discussed the lack of representation within the Black community, in the depths of her battles remembering looking around and seeing nobody that looked like her sharing the same struggles as her. There is still a huge gap in both research and treatment as a result of racial bias, causing people to be disproportionately impacted by Eating Disorders. For many, like in Marilyn’s experience, both diagnosis and treatment are delayed or denied altogether because of this lack of knowledge, training and access to care which has deadly consequences.

Megan Jayne Crabbe shared her experience with anorexia, the impact of cultural messaging early on in her life and the impact the body positive movement had on her recovery. Megan spoke with such passion and drive for change in the way we see our bodies and built a better relationship within ourselves and preventative measures for Eating Disorders as well as the wider issues within diet-culture. She highlighted that although she considers herself recovered from anorexia the underlying issues are still there and she is still on a journey to continue finding ways of managing that are not self-destructive.?

The Bed Post Blog shared her experience with binge eating disorder (BED)? that spanned across 40 years, beginning at a time where bulimia was only really starting to be recognised, she, and those around her consequently had no idea that she was struggling with BED, it was unknown and isolating. Sharon spoke about the weight-stigma she faced within medical settings when reaching out for support only to be prescribed diet and exercise, something that many people in larger bodies face all too frequently. It wasn’t until 2013 that BED was officially recognised, that she finally got a referral to specialist treatment, after years of shame and stigma. Sharon said something that really stuck with me, “The system isn’t just failing to treat Eating Disorders, it’s perpetuating them” and I know it rang true for so many.?

Ken Richards shared his heartbreaking, and devastatingly all to common story. Ken spoke candidly about the impact Eating Disorders have on the wider family, and following the loss of his daughter Jade to anorexia in 2020. There wasn’t a dry eye around, the truly devastating reality of this illness and again highlights why this campaign is so important, because no one should be dying from an eating disorder. Ken discussed the failures of the government, the lack of funding and inadequate support from services in the years leading up to Jade’s death and the immense anger and sadness of knowing this could have been avoided with effective and efficient treatment. Ken has promised to keep fighting for change, not wanting Jade to be ‘another statistic’, it simply cannot go on like this.?

A last minute change to the schedule meant that unlike last year the March took place in between two sections of speeches. With the number of speakers we were fortunate to have on the day, splitting the speeches into two halves actually worked out really well, allowing for a slight breathera€| and time to shout it all out as we walked down Whitehall, past Downing Street before ending at Old Palace Yard. The noise we made was incredible, social anxiety fading as we chanted our way through busy central London, made possible by an exceptional group of passionate people campaigning for change. The adjustment to the days schedule was to ensure that we did not add any disruption to the Palestine Solidarity Campaign march taking place in the same area, having liaised with the organisers to let them know what time we would be marching we were warmly welcomed and shown a huge amount of support as we crossed paths with those in attendance, a truly beautiful moment. Again, bittersweet as neither of these protests should need to happen in order to be heard by our failing government, and the rest of the world.?

The day ended with the remaining speeches at Old Palace Yard, with the helicopters above cheerleading heavily. As Hope ended the day with some call to actions and thanks to all those who made the journey to be with us the sense of community was so clear and incredibly wholesome to be a part of.?

We stayed around for another hour which gave everyone a chance to chat, and network as well as time to catch up with old friends some of whom I met through past campaigning, others from my time receiving inpatient treatment - incredibly special to reunite for this campaign, and a very different environment to that we met in.?

There is so much more that I could say, so many more subjects that I could touch on, and will do so in the future, but I think the key point for me is the importance of intersectionality in Eating Disorder research and treatment. There needs to be a greater recognition of social identity when treating an individual or collecting and interpreting data to ensure inclusivity between race, gender identity, sexuality, disability, socio-economic situation, religion, age etc all of which are significant in an individual's experience and should be properly acknowledged and taken into consideration to ensure appropriate support is provided. We know the current demand far outweighs supply, funding is critical not just in treatment, but prevention and research. Early intervention is critical, but so is being given the appropriate individualised treatment plan/style which is both timely and effective without time constraints. As mentioned during the speeches this is not simply about the injection of more money, but the funding being directed into the right places as well changes to outdated and harmful narratives that still occur across healthcare, policy and society today.?

The fight continues.?Until next time... we march on.

Jodie

Photo credits: Tallulah S.

Hope Virgo Suzanne Samaka Debbie Taylor Joss Walden Lisa Tweddle (Neiss) Full of Beans - It was a pleasure to work with you all, what an incredible day.