When we think of eating disorders, we often imagine short-term, treatable conditions – someone struggling with food and body image for a period, receiving therapy, and then recovering.
However, for some people, an eating disorder becomes a long-term, deeply entrenched part of their life.
This is the reality for people with Long-standing and Severe Eating Disorders (LSED) – a term we feel better reflects their experiences than the more widely used label of ‘Severe and Enduring Eating Disorders’ (SEED).
In this post, we explore the complexities and challenges of long-standing eating disorders, the importance of structured, ongoing support for both patients and their caregivers, and what future care could look like for LSED. But first…
Is ‘SEED’ the right term?
The term ‘Severe and Enduring Eating Disorders’ (SEED) was originally used to reflect the chronic nature of these conditions for some individuals. That is, for those people who have been unwell for many years and for whom traditional treatments have not led to a full recovery.
However, there are growing concerns that this term may be problematic – and even counterproductive – for patients and caregivers. Here’s why:
- The word ‘enduring’ can unintentionally suggest that change is not possible, which may lead to hopelessness for individuals affected, their families, and even clinicians.
- The label itself could impact the way services approach care, potentially leading to assumptions that these individuals are ‘too difficult’ to treat or left with limited support.
- There’s no clear definition of what makes an eating disorder ‘severe and enduring’ – should it be based on time, treatment resistance, medical risk, or the level of functional impairment? Without clarity, there’s inconsistency and inequity in care across the UK.
For these reasons, many professionals – Altum Health included – now use the term ‘Long-standing and Severe Eating Disorders’ to focus on the severity without implying permanence.
The complexity of long-standing eating disorders
Eating disorders are not just about food, and there’s a big difference between people who are newly diagnosed and those who’ve been living with an eating disorder for several years.
The longer you live with an eating disorder, the more it can become a part of your identity. The idea of recovery, therefore, may evoke increasing fear over time as it can feel like losing a large part of who you are.
Consequently, where behaviour-focused treatments such as CBT-E (Cognitive Behavioural Therapy for Eating Disorders) are invaluable for many, those with LSED may have undergone multiple treatments without success.
Treatment approaches for long-standing eating disorders
For those living with LSED, treatment is often more complex. Many have already received traditional, first line treatments, yet still struggle with deeply ingrained emotional, cognitive, and behavioural patterns that keep the illness entrenched. So, how can we best support these individuals?
Firstly, not all patients need the same care. To ensure we consider the best possible treatment, we need to tailor this care and consider:
- Past: Which treatments have been tried in the past – what worked and what didn’t?
- Present: Why now? What’s created this opportunity for change? Perhaps a new job or the desire to start a family?
- Future: What’s the end goal? Preventing further health deterioration, reducing distress, improving quality of life, or greater stability?
The answers to these questions are essential to guide the treatment plan. For example, if the goal is to ensure ongoing physical safety, a supportive space, and a more flexible approach, Specialist Supportive Clinical Management (SSCM) can play a vital role here. It offers structured, ongoing support without an overwhelming focus on immediate change.
For others, alternative therapies that address emotional processing, entrenched belief systems, and identity shifts may offer more promise. These include, but are not limited to:
- MANTRA (Maudsley Model for Adult Anorexia)
- Schema Therapy
- Internal Family Systems (IFS)
- Acceptance and Commitment Therapy (ACT)
- Compassion Focused Therapy
Neurodiversity and LSED
It’s also essential to consider other factors when determining the most appropriate treatment.
One is the possibility of neurodiversity. Only recently have professionals begun to better understand the intersection between neurodivergence and eating disorders, and this awareness is crucial for tailoring treatment to individual needs.
Unprocessed trauma
Another key consideration is the presence of unprocessed trauma. In some cases, addressing trauma — perhaps through specialist interventions like EMDR — can be an important step in helping clients move forward in their recovery journey.
The impact on families and carers
Families and carers play a crucial role in the support system for those living with eating disorders.
However, as patients become older, families often become less involved in their care, leading to feelings of helplessness and frustration. Carers often experience stress and anxiety from being constantly worried about their loved one’s well-being and navigating uncertainty and crises.
Crisis action plans are crucial to help reduce anxiety for patients and their families. However, families and carers also require a structured framework to give them the emotional and practical support they need. This includes:
- Better education and guidance so carers feel empowered rather than helpless.
- Stronger collaboration and clearer communication between clinicians and families to ensure they’re actively involved in discussions about care and not left in the dark.
- Carer-led support groups and training to connect with others in similar situations to know they’re not alone.
Moving forward
We’ve spoken about the complexities of LSED, the treatment approaches, and the impact on families and carers. But where do we go from here?
Despite the challenges, there is hope for those living with long-standing eating disorders. I was recently part of a discussion led by The Royal College of Psychiatrists, which is gathering insights from clinicians, patients, and carers to develop a position statement on LSED.
This could be a key moment for change to:
- Establish clear, national guidelines for the care of individuals with LSED.
- Improve referral pathways for GPs to ensure better long-term support.
- Develop a more sustainable model of care that acknowledges both the complexities and possibilities for change.
What’s clear is that one-size-fits-all treatment approaches do not work for long-standing eating disorders. Living with LSED is a complex and often isolating experience, but it’s not untreatable.
I’m confident we can move towards a system that balances realism with hope, treatment with harm reduction, and clinical expertise with lived experience.
We must rethink how we define, discuss, and approach care for individuals with LSED and provide sustained help for families and carers so they’re not left to navigate this challenge alone.
If you or someone you know is struggling with LSED, please get in touch with Altum Health to find out how we can support you. You can book a free, 20-minute consultation here.
Take care,
Dr Courtney
