A young woman who became severely unwell with an eating disorder claims she was initially refused professional help as her weight "wasn't low enough".
Alice Sotero, from Rumney, Cardiff, was formally diagnosed with anorexia nervosa in 2018 but had secretly battled with the condition for the previous two years.
Initially, the 27-year-old admitted she was reluctant to seek support and was content in the "bubble" she had created for herself which involved not eating to the point where she struggled to walk or talk.
Read more: 'Anorexia made me so weak I would go to sleep not knowing if I'd ever wake up again'
When her parents finally encouraged her to seek professional help from GPs and other healthcare professionals, she claimed they lacked the expertise to deal with her eating disorder.
"Unfortunately, some professionals I met here in Wales had little experience in what I was going through and the criteria for diagnosis was quite strict. This led to some hurtful and unhelpful comments about my weight not being low enough and my physical self not being poorly enough," she said.
"That was really difficult for my parents to hear. Just as they were getting somewhere they were met with another barrier.
"I was very lucky to meet some professionals here in Wales that were helpful, but support is rather limited. When I did ask for help it often felt like I wasn't heard which then made my eating disorder worse."
Alice, who is originally from Caerphilly, said she was given initial support from a community mental health team involving support workers, psychologists and dietitians. But she admitted she was "too high risk" and was unwilling to engage with them.
When she became more "entrenched" in her illness, she ended up having two inpatient admissions in Wales - one to a general medical ward and another to a mental health unit.
"From my experience, I recognise that these types of inpatient settings are not appropriate for eating disorder patients and they place additional demands on staff there who are not trained in this illness," she added.
Fortunately, Alice said she received another inpatient admission to a specialist eating disorder unit in England which she said changed her life for the better.
"I cannot recommend them enough. Staff were appropriately trained, supportive, and enabled me to make steps towards recovery," she added.
"I feel that Wales would benefit from looking at other units across the UK and providing similar services here. Being taken away from my home and across the border was extremely difficult for me at my most vulnerable time."
Alice, who said her illness was likely to have been triggered by previous traumas and bereavements, said she is now fully recovered and free from her eating disorder. She is now a second-year psychology student at the University of South Wales.
"I have now re-framed my experience as it has shaped me in many wonderful ways. I now volunteer for the eating disorder charity Beat as an ambassador to promote awareness through my experience, but also as peer support for those currently struggling."
Beat has published a new report this week which looks at the progress made since a review was submitted to the Welsh Government in 2018.
It found that while some progress has been made to expand and improve services for the 60,000 people in Wales with an eating disorder, this progress has been "very uneven".
Part of the problem, the charity claims, is a lack of workforce funding which was impacting the ability to treat every young person with an eating disorder.
Beat's report also found that investment in specialist adult community eating disorder services increased by just 1% in real terms between 2018-19 to 2020-21, and health board spending on these services varied widely.
Since 2018, some areas have broadened access to treatment by establishing new specialist teams for child and adolescent mental health services (CAMHS) or by expanding adult teams.
However, in other areas in Wales Beat said specialist support is still only available for people who are already severely ill, and access to treatment for binge eating disorder and avoidant/restrictive food intake disorder (ARFID) continues to differ dramatically across the country.
Clinicians said in the report that they have been seeing many more people with eating disorders during the pandemic and are concerned about people deteriorating as they wait for treatment.
To ensure equal progress and improvements in eating disorder services across the nation, Beat has outlined four key recommendations for the Welsh Government and NHS Wales. These include:
- Publishing a new plan – complete with timelines – for achieving the vision of the 2018 eating disorder service review, so that everyone affected can access effective help quickly.
- Extending the 'national clinical lead for eating disorders' position permanently.
- Improving its guidance on the extra funding it provides for mental health services and holding health boards to account over their total investment in eating disorder services.
- Ensuring that people with lived experience of eating disorders, including families and other carers, are always involved in helping to improve services in Wales.
Beat's national officer for Wales, Jo Whitfield, said: "Eating disorders are serious, complex mental illnesses that can be extremely distressing for those with the illness as well as their families. At Beat, we experienced over 220% more people from Wales contacting our support services between April 2020 and March 2021 in comparison to before the pandemic, and we are saddened that many individuals, carers and families across the nation are not getting enough support.
"We know that accessing the right treatment quickly leads to the best chance of making a full recovery, and it is encouraging to see that some progress has been made. Implementing our recommendations would enable the Welsh Government and NHS Wales to transform these services across the whole nation, ensuring that everyone affected in Wales can access life-changing support quickly."
Dr Menna Jones, the national clinical lead for eating disorders until December 2021 said: "There has been considerable improvement in services for children, young people and adults with eating disorders in Wales since the publication of the eating disorders service review in 2018.
"This progress was accelerated further when the Welsh Government provided dedicated funding for the first time for a national lead role in eating disorders, and it has now been confirmed that funding will be continued for the next year for a national lead in eating disorders.
"Beat’s report is extremely helpful in identifying where there continues to be variability in what services are available in areas across Wales and helps to ensure that meeting the needs of all people with eating disorders and their families remains a high priority."
In response to the report, a Welsh Government spokeswoman said: "We have continued to invest in eating disorder services and since 2017, health boards have received an additional £3.8m to support improvements, in line with the 2018 Eating Disorder Review. We are considering the finding of the report by Beat to inform next steps."
If you’re worried about your own or someone else’s health, you can contact Beat, the UK’s eating disorder charity, 365 days a year on 0808 801 0433 or beateatingdisorders.org.uk
