Transformation Partners in Health and Care has worked closely with a group of experienced clinicians and experts by experience to develop a set of guiding principles on disordered eating, and how to best support and meet the needs of this group. This blog has been published as part of a series to explore the topic of disordered eating in more detail and will feature many of the experts by experience and clinicians who helped develop this work. Find out more about this series here.

By Dr Luci Etheridge and Dr Charlotte

This blog has been co-authored by Luci Etheridge, a consultant paediatrician and Charlotte Harris, currently working as a specialist doctor in a Family Eating Disorders Community Service. We are writing this blog to raise awareness of disordered eating and share the experience and benefits of joint working between paediatrics and mental health teams to best meet the needs of young people.

The last four years has seen a sharp increase in young people presenting to acute hospitals with disordered eating and crises of food and fluid refusal. Prior to the pandemic, many paediatricians did not have experience of looking after young people who were seriously struggling with their eating. Since the pandemic, paediatricians across London report that this is now a common presentation to their emergency departments and clinics, and they struggle to know how best to support young people to eat when on their wards. We have certainly seen this across both the services we have worked in.

The young people we are seeing need support and care for both their mental and physical health. To achieve this, a holistic approach to care is needed. It is important for those working in CAMHS services (both specialist community ED teams and generic CAMHS teams) and those working in paediatrics to build relationships at a local level in order to work together, to share learning and experience. This blog outlines our personal experiences and the benefit, for our patients and ourselves, of jointly working together to meet the needs of young people with disordered eating.

What presentations have we seen on paediatric wards in the last four years?

Our CEDS covers a catchment area of 1.2 million across four London boroughs and receives around 350 referrals a year. Prior to 2019, the paediatric ward admitted around 25-30 young people a year with medical instability due to starvation and underweight, with an average length of stay of under 10 days.  However, in 2020 we saw these numbers start to rapidly increase, more than doubling in 2021. More families presented in crisis to the Emergency Department rather than through mental health services. These complexities, along with the pressure on mental health beds nationally, meant that our length of stay on the ward increased significantly and more young people required nasogastric tube (NGT) feeding and Mental Health Act (MHA) assessment.

We also noticed a change in presentation, with more young people presenting with disordered eating as a feature of other co-morbidities or co-occurring conditions. This included autism spectrum condition, with significant predating social communication and social anxiety difficulties hidden by long-term ‘masking’. Over time these young people had become increasingly overwhelmed by their emotional experience, developing a depressive disorder or becoming emotionally dysregulated. Disordered eating became a way to try and cope. A number of these young people also showed evidence of complex post-traumatic stress disorder (PTSD).

Emotional dysregulation as a symptom of emerging Emotionally Unstable Personality Disorder (EUPD) was also seen. Again, this was often complicated by developing an anxiety or depressive disorder.

Some of the young people presenting in crisis on paediatric wards clearly had a history of disordered eating and had developed a formal eating disorder. The huge pressure on CAMHS Services also meant that we were seeing more young people and families that had been on waiting lists for CAMHS support but had not yet been able to access this, which can also cause added long-term trauma. This led to some young people stuck on NGT feeds, often at a healthy weight, needing to be admitted to a SEDU. This then carried significant risks for their prognosis, especially EUPD and autism, as there is increasing evidence that inpatient admissions for these presentations can make mental health difficulties worse and more entrenched.

How did we approach this change?

We recognised quickly that we needed to change how we supported these young people and families, with much more co-ordination between physical health, mental health and social care and a more risk-based approach. The rise of virtual working during the pandemic was helpful and meant that staff from the paediatric ward could join the mental health multidisciplinary team meetings virtually every week to share learning, expertise and insights from working with the young person and family. A clinical nurse specialist from the mental health team was based on the paediatric ward two mornings a week, both to support and debrief nursing staff and to work directly with some of the young people to support transition to eating again.

We also introduced a weekly joint paediatric and mental health ward round for all young people on the ward with disordered eating. This was essential in continuity of care. Having the same consultant paediatrician and psychiatrist who knew the patients every week, with in-reach by community case managers to continue family-based therapy, allowed for co-ordinated longer-term planning. Charlotte was given time to be able to assess complex presentations in more detail, reformulate, and, if needed, help expedite more specialist interventions or assessments, such as autism assessments.

We also realised that there was a need to provide specific training for the paediatric nursing staff e.g. safe restraint practices. We thought more about the paediatric ward environment together, potential adaptations they could create e.g. furniture for safe NGT feeds, along with thinking actively about possible (however small) ways to reduce level of sensory overload for some young people with autism. There was also the need to think more creatively about meal plans and ward leave, especially for patients on the ward for weeks or under the MHA.

We also tried to get the same mental health nursing staff from agencies regularly, or on short term contracts, to help young people and families feel there is someone familiar with them as much as possible, someone they could build a relationship with and feel safe with. Since then, we have built the case for mental health workers as part of the ward establishment.

Luci: Some of the things I learnt working with a mental health team
For me, the joint ward round provided a real opportunity for active learning with my mental health colleagues.  I could augment my practical experience of working with young people with Charlotte’s extensive knowledge and understanding of eating disorders in different settings.  Hearing Charlotte talk with young people about what eating disorders are like at different stages helped me develop my own understanding much more. We were able to discuss the different elements of the young person’s difficulties and plan in a structured way, each contributing their own expertise to the overall picture, including the expertise of the patient and family. For example, if a young person was very distressed and it was felt that medication would be helpful, Charlotte was able to assess, advise on options, discuss this with the young person and provide expert input to prescribing, while I was able to advise on how this might affect them physically, how we would monitor this and any important interactions, and we could get regular feedback from the young person on whether it was helping and make any changes.

Young people and families would be worried about different elements at different times in their journey and having a paediatrician and psychiatrist together allowed us to address all these concerns and plan care in a co-ordinated rather than fragmented way. For example, when families were very worried about physical risks and unable to think about next steps, we were able to contain some of that anxiety and help them focus on therapeutic progress.  When they were very concerned about their young person’s distress and behaviours, we could address those worries rapidly but support them to keep up a level of firm but compassionate challenge to help physical improvement. The joint leadership allowed us to work with the young person and family together or separately, depending on what we felt was needed. It also allowed ward nurses to seek answers to issues directly, especially around longer-term pathways of care, building their confidence in supporting families.

At our busiest time in 2021 we had 10 young people with disordered eating on our paediatric ward, all at different stages of their journey. This was a huge challenge for the paediatric staff and the support of the mental health team and the opportunity to directly engage with them and learn from them was invaluable. It opened lines of communication that are still open to this day and helped build productive and supportive working relationships that have improved the care for young people and families.

Charlotte: Some of the things I learnt working with a paediatric team
Directly seeing the pressures and resources of the paediatric ward really emphasised to me how essential joint mental health working is to support our paediatric colleagues working with very unwell young people. The impact of trying to support young people and families is often very emotionally draining and upsetting, even with mental health training and expertise. The paediatric nursing staff were often being subjected to extreme anger (distressed young people or desperate parents), rudeness and at times accidental harm or physical assaults, often related to resistance to NGT feeding. The dedication of the team was amazing despite these challenges. Being able to address unacceptable behaviours with authority was essential. We could be explicit to parents and young people about the roles of different team members and the stages of the journey. We would also validate concerns and advise together on appropriate channels of complaint when required. Being seen as a team working together, giving the same messages, ultimately did seem to reduce the splitting commonly seen with these kinds of presentation.

Working with an expert in physical complications of severe eating disorders was invaluable to my learning; developing more expertise and confidence in having more detailed physical health conversations with my patients when needed. I also gained more insight into potential safety of psychotropic medication considerations in such an unwell group of patients.

It was also clear to me that having Luci as the identified lead clinician for all eating disorder patients helped the nursing team feel more contained and provided the essential continuity of care this patient and family group need.

Being on the ward more consistently allowed for more informal conversations with different paediatric staff about patients, helping understanding of the nature of the difficulties and why someone may be behaving as they were.  The paediatric team wanted to learn; being accessible in this way could help reduce staff anxiety and fear of having to manage this group of people and help them approach each patient with even more empathy.

This experience has been invaluable to me, seeing the joint working improving the experience of care, and the support provided to young people and families, helping them feel more contained and less isolated from the different services that are involved in their care.

 

How we develop a shared approach to managing risk

The nature of different professional backgrounds is that different professionals will feel more comfortable with some areas of risk than others. Healthcare is never risk free. However, by understanding risk better, understanding that attempts to mitigate any one risk may lead to increased risk in other areas, and by being able to have these conversations with patients and families in a dynamic and open way, we can improve patient safety and experience.

This is especially true when a very distressed young person restricts their eating in an attempt to control their distressing feelings. Paediatricians will worry about distress and associated behaviours, such as self-harm, and they may not have a framework for understanding and managing that, which may limit what they feel able to do. Mental health professionals may worry much more about starvation and physical risk and feel unable to engage in therapeutic work until this risk goes away. This can be why young people with disordered eating can get worse rather than better on paediatric wards.

Our approach was to acknowledge the complexity of this balance and work through the risks with the young person and family, recognising that sometimes an action to improve one area would make another worse. By doing this jointly, we were better able to risk stratify and involve families in this. For example, if we were planning home leave to trial eating at home with an anxious young person, we would think through with parents how much eating was ‘safe enough’ and when, and when not, to worry physically, and with the young person what might lead them to self-harm, how they would be able to keep themselves safe and what they needed from their parents and professionals for this. By being very holistic, we were also better able to involve other services, such as social care, when needed and give them much more clarity on the problems we were trying to solve.

Where next?

Referrals for eating disorders and disordered eating continue to be high across the country and paediatricians will continue to see young people present to acute hospitals with complications of this.

There is still a way to go nationally in changing culture and belief systems of many extremely busy and stretched paediatric wards with respect to treatment and understanding of disordered eating. Mental health services have a significant role to play in this. We advocate for strong working relationships between acute hospitals and local CAMHS teams, with shared guidance, pathways and roles, to help improve holistic and patient centred care for all young people. If weekly face to face ward rounds are not possible e.g. for geographical reasons, a weekly MDT virtual meeting with professionals can be set up for these more complicated presentations. We can all learn from each other, increasing our understanding, knowledge and expertise and reducing misconceptions.