The first of the two linked papers describes in detail Lorna’s lived experience of her physical and mental health recovery journey [1]. In summary, she had a complex psychiatric history that began in 2000, following a horse-riding accident when she was 18-years-old and suffered a TBI. She was in a coma for several days, and brain scans showed multiple lesions following the head injury, particularly affecting the right parietal lobe, temporal lobe, and claustrum. Prior to the accident, she was highly functioning, excelling in both academia and sports. There is no family history of mental illness.

She was hospitalised on many occasions (See Table 2) and never out of hospital for more than 6 months, over a span of 17 years, because of AN, acute mental health crises, and incidents of life-threatening self-harm. She struggled with chronic malnutrition and required repeated emergency medical treatments, often against her will. Lorna experiences residual visual, auditory, and tactile hallucinations, but these do not interfere with her functioning.

Table 2 History of admissions (excluding multiple admissions to acute mental health wards, A&E and general hospitals)

Throughout her medical history, she had multiple changes in her diagnoses, and in addition to AN, she was diagnosed with schizoaffective disorder, schizophrenia, psychotic depression, various types of personality disorder (e.g. emotional unstable personality disorder, organic personality disorder), organic hallucinosis, and CPTSD which highlights the complex nature of her condition but caused confusion and inconsistency in her treatment. She was treated with multiple psychotropic medications and received an eclectic combination of individual and group therapies (Table 2). Her admissions represented typical TAU in the UK SEDUs.

The total cost of her psychiatric admissions prior to the I-CBTE treatment was in excess of £1million (based on a conservative estimate of £500/bed day on average) in 17 years, approximately £60 k/year. Since completing I-CBTE treatment, she has not had any admissions in 6 years and saved approximately £360 k for the NHS on psychiatric admissions alone, not to mention an improved quality of life, ability to work and flourish, and her life being saved.

Formulation-informed multidisciplinary treatment

The I-CBTE formulation was at the centre of Lorna’s treatment and encouraged her to consider why she became ill and what the maintaining factors were. She had a background in research and found this useful because it helped to justify and understand the illness rather than blaming herself. A personalised version of the formulation diagram (Fig. 1) provided a ‘helicopter overview’ of her key maintaining factors and guided her and the MDT (including dieticians, family therapists, nursing staff, occupational therapists, psychologists, psychiatrists) in terms of goal setting and the development of a detailed MDT treatment plan. The staff helped her develop a range of old and new coping skills and strategies (‘tools in her toolbox’) for each maintaining factor and to ultimately become her own therapist. Similarly, other patients, including Lyn and Mollie found the personal formulation very helpful (See Additional Files 1 & 2).

Every member of the multidisciplinary team at Cotswold House contributed towards my treatment. I could speak to someone on each shift about how I was doing. In this way, I built trust with the team, as they all said the same thing, which supported my recovery journey.

The I-CBTE model worked because it was built on my strengths and flexible to my particular situation ... I accrued a bundle of go-to resources to help me deal with life’s continual ups-and-downs... [1]

Body-image and overevaluation of weight and shape and control

Lornas’ ED involved an extremely negative body image and a strong ‘need for control’. She presented with weight-checking behaviours (e.g. frequent weighing), shape checking (e.g. measuring body parts, checking for a flat stomach), and shape avoidance behaviours (e.g. wearing baggy clothes and avoiding looking at certain body parts). She engaged in comparison making behaviours with others (i.e. a competition to be the thinnest) and herself (e.g. when she was at a lower weight). Her artwork illustrated distorted perceptions of her body and beliefs of being fat. According to her notes, therapy and psychoeducation helped her develop a range of coping strategies, including setting goals for self-care, using self-talk techniques, and building a new identity separate from her appearance (i.e. to become a ‘survivor’ and to transition from a ‘chrysalis to being a butterfly’). Members of the MDT coordinated their interventions to improve her body image. For example, to help with between-therapy session tasks, the assistant occupational therapist took her shopping to explore which clothes and jewellery she liked wearing and made her feel more comfortable in her body. The importance of the whole team approach was also highlighted by other patients (see Additional Files 1 & 2).

Dietary restriction and other weight control behaviours

Patients restrict their food and drink intake for many reasons. For Lorna, it was to manage her weight, to regain a sense of control, a method of ‘self-destruction’, to ‘purify’ herself and to gain a sense of achievement. Obsessions with food restriction, weight control and over-exercising helped to deal with the voices, frustration with the brain injury, and ‘bad’ emotions of shame and guilt. Alongside psychological therapy to address the underlying reasons for restricting (e.g. trauma, emotional dysregulation, low self-esteem), the dietetic, medical, and nursing teams played a key role in helping her restore weight through psychoeducation, maintaining her safety with alternative skills for emotional regulation and distress tolerance, implementing meal plans, and transitioning to independent shopping and social eating. Calorie counting, to distract from the hallucinations, required further neurological assessments and management with medication and cognitive behavioural and Dialectical Behaviour Therapy (DBT) strategies. A collaborative approach with Lorna was essential to replace the sense of control provided by dietary restriction and weight control behaviours.

Malnutrition and secondary effects of being underweight

Similar to other patients who experienced repeated admissions with partial weight restoration, Lorna found it difficult to accept that full weight restoration was essential for recovery. Helping her understand the science and sharing outcome data helped her take a plunge and work towards full weight restoration. Supported by the MDT, she engaged in nutritional groups and mealtime planning with a dietician, and healthcare assistants helped her manage post-meal discomfort using new strategies such as painting and writing. She achieved a BMI of 20 at discharge and continued her progress in the community, stabilising at approximately a BMI of 22. Weight restoration meant that the secondary psychological (e.g. rigid and black-and-white thinking), physical (e.g. exhaustion, dehydration, dizziness, feeling weak, and cold), and social effects of malnutrition went into remission.

During previous admissions… I managed to convince the doctors that I did not need to put on much weight at all. The physicians then entertained this idea and never attained a healthy weight. I did not even know what a healthy weight was. The breakthrough came at Cotswold House, where I realised that if any kind of future or life was possible, I needed to put on a lot more weight and be this new thing—a ‘healthy weight’. I learned that doing this would allow my body to heal, and it would give me the chance to finally live well. Suddenly, I had options: not just an eating disorder but a future [1].

Compensatory behaviours

Lorna identified overexercising and the use of appetite suppressants (e.g. compulsively chewing gum and drinking fizzy drinks) as key maintaining factors. Treatment helped her to stop and learn healthy alternatives to replace these behaviours. By the time she was discharged, she no longer had the inclination to use these behaviours.

Mood intolerance and event-related eating

Lorna’s ED and self-harm were partly coping strategies to numb and regulate intolerable emotions and feelings of shame, guilt, low mood, frustration, and impatience with herself. Self-harm incidents were extreme acts of aggression for not meeting her own standards, for internalising anger towards her family, and for ‘being angry at being angry’. Her medication (and reminders), individual therapy, I-CBTE groups, and the MDT helped her find new ways to express her emotions (e.g. writing poems, cathartic painting), problem-solving to deal with situations, and use DBT skills [25] for mood intolerance.

Perfectionism

In her family, high standards provided an ‘exemplary, necessary method of living’. Striving for perfectionism reflected her ambitions and competitiveness, including a desire to become an Olympic champion, and meant that she could never appreciate or be satisfied with her performance. Achievements were replaced with higher targets. The MDT supported her in challenging her perfectionism and developing skills to build a new outlook for herself and her world. In this regard, overcoming perfectionism required a wide variety of new strategies, such as learning to identify ‘vicious cycles of perfectionism’, setting and celebrate smaller achievable goals, setting goals for other areas of her life, developing a better work/life balance, using kind rather than critical self-talk, and ‘rewarding herself for rewarding herself’.

Low self-esteem and identity problems

Lorna exhibited many negative cognitive processes of a core low self-esteem such as discounting any positive qualities and achievements, selective attention to her ‘defects’, and applying double and higher standards for herself than for others. The individual therapy and self-esteem groups taught her many skills to improve her self-esteem, and she was able to replace negative core beliefs (for example, ‘I am bad, not good enough, insufficient, always wrong’) with new helpful self-beliefs (for example, ‘I am a survivor and a butterfly’).

Interpersonal difficulties

Lorna was estranged from her family during long periods of her life, and they declined formal family therapy sessions. However, changing the language and offering ‘meetings to manage Lorna’s transition to the community’, rather than calling it ‘family therapy’, helped to engage her family and enabled her to successfully transition back into her family and to rebuild fulfilling relationships. Regular family Sunday lunches were introduced with the family and continue to this day.

Trauma

Components of trauma-focused CBT, as recommended by NICE [26], were integrated into Lorna’s treatment, such as psycho-education about trauma reactions; strategies for managing arousal and flashbacks; development of a trauma narrative; safety planning; processing trauma-related emotions such as guilt, shame, and anger; restructuring trauma-related meanings; and re-establishing adaptive functioning, such as engaging in work. Integrating art and paintings into therapy allowed her to process and express the unsayable through other means than self-harm wounds. Painting was a helpful distraction strategy, provided a window for others into her internal pain and trauma, and was an important part of the healing process.

...I used my art (painting and poetry) to express the most difficult issues, about trauma, abuse, dissociation and amnesia. David would ask me to paint what I could not speak about. I was able to go away and paint a picture (abstract or figurative), which opened the unmentionables. We then discussed this painting, and approached the topic from a creative angle, which made it more possible to process. In this way, I began dealing with the most difficult roots of my illness [1].

Motivation and insight to change

Lorna’s motivation, insight, and commitment to change fluctuated, and, for long periods, the team had to hold the hope that recovery was possible. For example, she resisted achieving a healthy weight, but with education and support from the staff, her trust in the team and herself grew, which in turn helped her motivation. She felt increasingly motivated to recover, as she began to experience that weight gain and progress on various historic maintaining factors were realistic and attainable targets.

Risks

Lorna had a very high risk of suicide with a history of severe self-harm and multiple suicide attempts. Her extreme self-harm had many functions.

Self-harm was a method of communication, but nobody was listening. Maybe I did not exist; only the men telling me to destroy myself were real [1].

The coping strategies that she found most helpful were talking to staff and finding distraction techniques which worked best e.g. ice packs on her wrist, listening to music to distract from the ‘aural cacophony’ and using self-statements (e.g. ‘I’ve had periods of not doing it, which shows that it is possible to resist the urges and stay safe’), reminding herself that there were things she wanted to do in this world, which she couldn’t if she destroyed herself. In this regard, spending time in nature with her dog and horses after discharge provided sustained relief and reminded her that she had a purpose and was needed. Writing and making art to express how she felt was all-important.

My paintings allowed me to express myself in some other means than my wounds. The abstract images I created embodied my feelings and gave me a voice other than self-injury. I could show the ward doctor the paintings and he could then understand my illness since I would paint how I felt [1].

Medical and psychiatric comorbidities

For many years, my eating disorder provided a (flawed) coping mechanism for the mental health difficulties I was having. After decades of unsuccessful treatment, the holistic, expansive care I received in Oxford helped me ...[1]

Lorna’s case underscores the necessity for integrating evidence-based treatments for both psychiatric and medical comorbidities which, if left untreated, complicate treatment and hampers outcomes [27]. Lorna’s treatment included interventions and principles from trauma-focused CBT; DBT for emotional dysregulation, distress tolerance, and self-harm; and CBT principles for the eating disorder and psychosis. Writing or creating art about her psychotic and trauma experiences were therapeutic and helped clinicians to understand what she was experiencing.

The TBI left her with organic hallucinosis and a range of visual and auditory (e.g. piercing sounds, noises, and voices), olfactory (e.g. smells that others could not smell), and tactile (being touched by a physical presence) hallucinations that contributed to her self-harm behaviour. Joining meetings of a Hearing Voices Network provided support and made her feel accepted by people with unique feelings and experiences.

Optimising her psychotropic medication was essential. We recommended Olanzapine as this has been shown to be beneficial in both hallucinosis and AN [28, 29]. In addition, Lithium was introduced because of its mood-stabilising and neuroprotective properties. The antidepressant was not changed. The combination of medications reduced the intensity of hallucinations and high levels of distress, enabling her to engage in psychological therapy. She had a history of discontinuing antipsychotic medications owing to partial symptom relief and negative side effects. During treatment, she learned to identify early warning signs, such as thoughts and urges to be “uncontaminated by chemicals” or wanting “to be free from psycho-pharmaceuticals”, indicating that she was about to stop her medication. Techniques such as self-talk, reminders to take prescribed medications, and strategies to manage side effects all improved her compliance.

Social care needs

Social insecurities (e.g. housing and financial problems) can delay recovery. For several years, Lorna had no home beyond university or hospital, and the housing difficulties contributed to cycles of relapse. As part of the I-CBTE model, the MDT supported her in finding accommodation near her family which helped to facilitate sustainable discharge.

Education/employment

Treatment helped Lorna reverse her malnutrition, reduce self-harm and make progress on various maintaining factors including developing as a whole person separate from the ED. Exploring new career opportunities, however, was not a straightforward journey. There were setbacks including when Lorna fractured a hip and was severely incapacitated for a period of time. Engaging in education and work opportunities provided the foundations for a new recovery identity and ongoing health because she knew she had to be well to become and sustain the person she dreamed of being.

Care and treatment context

Unfortunately, systems of care can contribute to EDs becoming severe and chronic. Compared to admissions in previous SEDUs, Lorna’s prognosis improved significantly when she received treatment in the Oxford SEDU that promoted full weight restoration, offered in-house evidence-based treatments delivered by qualified clinicians for all comorbidities and seamlessly across the inpatient and community pathway. Unlike, previous admissions, she was treated by an MDT that believed, and had experienced, that patients could recover from an ED irrespective of severity, duration or complexity.

My presentation (in a previous SEDU) flummoxed my consultant, and all the medical team. They said I was “treatment resistant”, I needed “long-term hospitalisation”... They even talked about a need to keep me “sectioned for life” [1].

Challenges and breakthroughs

As in all treatments for patients with severe and longstanding EDs, there were challenges. Lorna’s recovery was not linear. Her psychological state, motivation and commitment to change fluctuated, and there was a severe self-harm incident, which delayed her discharge. The team approached this crisis as a setback and an opportunity to learn from.

Treating the ED in the context of a traumatic brain injury provided another layer of complexity. Her medical management and medication side effects were another challenge. Setbacks were expected and framed as learning opportunities for both the MDT and patient.

Alongside the challenges and consistency of 24/7 MDT inpatient care followed by seamless outpatient care for a year, there were important breakthroughs and turning points. We adopted Dalle Grave’s (personal communication) approach of SEDUs being ‘colleges of eating disorders’ where patients and staff are interested in learning together and sharing knowledge about the development, presentation and evidence-based treatment of EDs. Lorna’s cohort of patients was invited to join the staff for a presentation by an external speaker on the relapse rates of patients with and without full weight restoration. Listening to the research evidence helped her accept that weight restoration to a minimum BMI of 20 was necessary for staying well. Other key factors on the road to recovery were the seamless continuation of psychological therapy after discharge and rebuilding of her life and relationships.

Long-term outcomes

After being a ‘SEED patient’ for almost 20 years, the long-term outcomes for Lorna included no further hospitalisations since 2018. She has not self-harmed or made any suicide attempts and the ED remains in full remission. Her organic hallucinosis is managed by medication (Olanzapine, Aripiprazole, Lithium, Sertraline) for which she continues to receive outpatient psychiatric follow-up. She had a setback in 2023, following a cycling accident and another head injury, which temporarily exacerbated the hallucinations, but not the ED. Her weight is maintained within the healthy range (BMI, 22–23). As for her current level of functioning, she has fully engaged in life and leads a successful life as an artist, writer, filmmaker and a creative health researcher leading research projects about the brain, mental health and creativity. Similarly, Lyn and Mollie have maintained long-term remission and have successfully rebuilt their lives.