Type of servicea
Possible personnel
Possible facilities
Full specialist eating disorder unit (SEDU)
Medical, nursing, dietetic, therapy
Outpatient, inpatient, day patient, liaison
Community EDS
Medical, nursing, dietetic, therapy
Outpatient, day patient, outreach, inreach, liaison
Non-medically led community EDS
Nursing, therapy
Outpatients, outreach, inreach, link with GP, liaison
“Pop-up” SEDS
Medical, nursing, dietetic
Inreach, liaison
There will be many places in which there is no access to a local eating disorder team with experience in inpatient management of severe anorexia nervosa. For example, in the UK, Northern Ireland and Wales both lack a local inpatient SEDU. How should services respond when a MARSIPAN patient turns up, near to death, in an A&E department in their area? In order to address this problem, which should be on the minds of health commissioners and managers as well as clinical staff, patients and carers, we have to consider the patient’s needs and how they can be met in a non-specialist service. In order to provide useful advice to a GP or hospital physician, there have to be local clinicians trained in the assessment and management of eating disorders, especially anorexia nervosa. Do these clinicians need to be on call? We would argue there does need to be an element of urgent availability and how this is achieved needs to be worked out locally. Consider a patient who is brought into A&E on Christmas morning, which happens to be on a Thursday. It will be five days before a specialist team member can see or advise on the patient. This gives plenty of time for feeding to be delayed (underfeeding syndrome), for excess refeeding to occur (refeeding syndrome), for the patient to exercise, get rid of food presented or nasogastric feed offered, and to become much more severely ill than on admission, with a proportionately higher risk of death.
Clearly, the availability of a properly constituted specialist eating disorder team is desirable in all areas because local clinicians will know where to look for advice when a severely ill patient presents for care. However, in an area without a local eating disorder team, who can provide this essential service? We believe that a minimal team with medical, nursing and dietetic members, all specially trained in the assessment and management of eating disorders, should be available to non-specialist units who might need to manage a MARSIPAN case. Such a case could be quite a rare referral in any one hospital, and the team would be occupied by other activities most of the time. However, when called they would prioritise supporting the unit managing the patient. The members of this “pop-up” specialist eating disorder service would need to be properly educated in clinical nutrition as applied to eating disorders and clinically trained in a specialist unit. They could be from a variety of clinical units. The doctor could be a liaison or a community psychiatrist. The nurse could be from a psychiatric ward, from a Liaison Psychiatry service or from a community team. The dietitian is likely to be from a medical unit, or a community dietetic service, there being very few in mental health settings. They would function a little like a cardiac arrest team, only coming together when needed, and like such a team, they would be specially trained and refresh their training regularly. In order to allow for expected and unexpected absences due to annual, study and sick leave, there would need to be more than one member of each profession contributing to the team. Such a team could be available to any non-specialist unit likely to have to deal with a MARSIPAN case. This could be a GP practice, an A&E department, a medical admission ward or a psychiatric ward. Thus, the idea of a specialist eating disorder team is one which needs to be interpreted according to local needs, geography and resources. In this chapter we refer to the Team as the group of professionals in the area who are designated as having specialist knowledge in the assessment and management of eating disorders; however, the service is arranged.
Because of the diverse services that might call on the Team, a problematic issue is where the responsibility lies for commissioning. Where no local specialist team is available, each acute hospital should collaborate with their mental health service provider to arrange such a service perhaps as part of the Liaison Psychiatry provision. Training for this role should form part of the plan for continuing professional development (CPD) of the team members and the Trust Clinical Directors should make sure that this is enacted in practice.
The “pop-up Specialist Eating Disorder Service” (pop-up SEDS) idea based on an existing community eating disorder service has been implemented in Northern Ireland:
There is no inpatient SEDU in N Ireland. The Community EDS has an “inreach” model, going to where the patient has been admitted and supporting staff there, including on medical wards. Medical admissions are focused on improvement of the patient’s physical state until transfer to a psychiatric unit is possible. In one Trust, a dedicated nurse led programme has been developed in the inpatient psychiatric unit and in that area no SEDU admissions have been required for the last 4 years (statement from local ED specialist consultant psychiatrist, September 2013).
Our view is that patients with severe eating disorders, wherever they live, should have access to a psychiatrist with specialist knowledge of the eating disorders field, whether from an established or a “pop-up” specialist team. This requirement has significant training implications, and until it is achieved, there should be urgent training of on-call senior psychiatrists (at consultant and senior trainee levels) so that there is always a psychiatrist available to advise in this difficult area. In fact, there is an argument for this training even where there is a local specialist Team, and psychiatrist, to ensure that there is a minimum level of expertise available out of hours. We do not regard this as an unreasonable demand. After all, most on-call psychiatrists would be able to recognise and manage uncommon conditions such as Wernicke’s encephalopathy, so why not anorexia nervosa?
When available the eating disorder Adult Psychiatric team from the SEDS can be pivotal in the assessment and management of patients with severe anorexia nervosa who present in an acute and an unstable state, i.e. really sick. These patients are at a high risk of dying as a consequence of starvation and its metabolic effects on the body. The specialist Adult Psychiatric team, the “Team”, referred to in this chapter is the local team that has expertise in assessment and management of patients with severe anorexia nervosa. The Team will be lead by a senior psychiatrist and will include specialist dietitians and nursing staff. Ideally they are well known in their locality and have good working relationships with the neighbouring medical teams. The Team is fully aware of the MARSIPAN guidelines and has already established working practices with the medical teams for managing these patients. Ideally, the Team has actively sought to establish local MARSIPAN multidisciplinary group(s) and are aware of the set up in the local hospitals they interface with.
The management of a really sick patient with severe anorexia nervosa is challenging as clinicians have to simultaneously address the biological, psychological and social aspects of the illness. Though the clinician recognises the need for urgent refeeding to reduce risk of cardiac arrest and organ failure, they might struggle to deliver the care that their patient needs because of overt or covert lack of collaboration from the patient. In addition, the carer’s stress has to be addressed and information and support given.
The Team will have to deal with different patient presentations. One patient might acknowledge her poor physical state and be sufficiently concerned to cooperate with the inpatient admission. Another might try to resist admission or try to “buy” time by promising to try harder “if only I could be given longer at home”. Expect the patient to try and secure support against admission from parents or other people even if until recently these very same people were forbidden, by the patient, to speak to the team. Most patients will openly acknowledge their fears of what will happen if they allow admission. They fear that refeeding will be imposed, that weight gain will be “excessive” and that they will not be able to engage in compensatory behaviours, e.g. exercise. In this emotionally heightened situation, the Team has to step in and take control by providing expert guidance to the patient, her family and other clinicians involved. The Team, under the leadership of the senior psychiatrist, needs to assess the patient and advise on the best management and to be available to respond to a changing situation. The Team will encourage other clinicians involved in the patient’s care to work as one team to avoid splits and speak with one voice. Clarity about the responsibility of different team members is crucial.
4.2 Initial Management in the Primary Care Setting
4.2.1 Presentation
By primary care doctor we mean the general practitioner or family doctor and will be referred to as the “GP”. The patient might first present to the GP either voluntarily or because of carer’s or a friend’s concerns. The patient might be known to the GP as someone who suffers from an eating disorder or this could be the first presentation for this patient.
4.2.2 Diagnosis
When a young woman presents with self-induced weight loss, terror of weight gain, ambivalence about treatment and feeling that she is massively overweight when she has a BMI of 17–18, the diagnosis is not usually difficult. As in all of medicine, it is the borderline case or the case of the patient with more than one disease, where the diagnostic challenges reside. In the following discussion, the female gender has been used for convenience. However, we are fully aware that men get anorexia nervosa and could well be the patient we are discussing. We hope our readers will allow this indulgence.
Consider these two presentations (fictitious but based on true cases):
1.
An 18-year-old woman is referred from the diabetic clinic where the staff are concerned that she is having difficulty controlling her blood sugars. She habitually leaves out insulin, has been admitted three times in the past year in diabetic ketoacidosis (DKA) and as a result maintains a low body weight with a BMI of 17.2. She is not apparently bothered about her weight, and you find that she has a history of self-harm and severe family disruption since the age of 12. The GP asks the eating disorder service to see her, but she is not accepted because her symptoms are so atypical. She is accepted by the general psychiatry service where a diagnosis of borderline personality disorder is made. She dies in the next episode of DKA.
2.
A 24-year-old woman is referred by her GP with 12 kg weight loss over 5 months and severe anxiety but no particular concern about her body image. She is seen twice in the eating disorder service but turned down for that service because she is thought not to have an eating disorder, but an anxiety state. She is referred for CBT and dietetic advice. Two days after the second appointment, she collapses and dies. Postmortem examination shows autoimmune destruction of both adrenal glands. Cause of death is undiagnosed Addison’s disease.
In both of these cases, patients were turned away from eating disorder services because of an atypical presentation. It is not, to us, unreasonable to establish criteria for acceptance. After all, we must have boundaries to the population to which our scarce resources are devoted. It was probably reasonable to say no to both of these patients. In the first case, it is unlikely that treatment in an eating disorder setting would have avoided her death. Her best chance might have been to be treated in a BPD service with one of the prolonged and complex treatments now available (NICE 2009). In the second case, however, a patient with a treatable physical disorder was presenting as a psychiatric case. Addison’s disease (Likhari et al. 2007; Anglin et al. 2006) almost always presents with fatigue and weight loss. Hence, referral to an eating disorder service, especially when the patient is a young woman, is to be expected. Other very common symptoms are hyperpigmentation, with intense tanning or darkening of mucosal surfaces, and hypotension. The urea and electrolytes show hyponatraemia and sometimes hyperkalaemia, both rather unusual in eating disorders. The definitive test, a short Synacthen test, is probably outside the realm of an eating disorder service. However, when suspicion is aroused by the other symptoms, signs and results of investigations, an endocrinology colleague will be delighted to take over the diagnostic investigations.
4.2.3 History
The GP will find that the patient is underweight and emaciated. The first task is to take a weight history to ascertain the rapidity of the deterioration and to identify any symptoms and signs suggestive of physiological compromise, e.g. faints, dizziness and inability to rise from a chair unaided or go up the stairs. The patient should be asked how much nutrition she is taking in and if she is carrying out any compensatory behaviours such as purging or exercise.
4.2.4 Examination
Physical Health
The patient should be weighed in light indoor clothing with no shoes and her height measured. The GP should carry out a brief physical examination to include inspection of peripheral circulation and check for presence of oedema, any rashes and any skin breakdown. The GP should examine the head and neck to look for lanugo hair and salivary gland enlargement and to inspect dentition for sign of acid erosion and infection.
Pulse and blood pressure sitting and standing should be obtained. The SUSS test (Fig. 4.1) should be carried out.
Fig. 4.1
The SUSS (sit-up, squat, stand) test to evaluate muscle power in anorexia nervosa
Mental Health
The GP needs to bear in mind that a patient with severe anorexia nervosa may be a patient who is in severe starvation state. The brain is affected by starvation and patient’s presentation will reflect this. The GP needs to look out for cognitive and motor slowing, inability to concentrate and register information and rigid and concrete thinking. In reality, it is often difficult to detect these changes, other than extreme cognitive and motor slowing, without more sensitive neuropsychiatric tests. It is only after the patient is much improved physically that the effect starvation had on the brain will be appreciated. It is sufficient to be aware of this effect during exchanges with the patient who will show a remarkable alertness and cognitive ability despite their considerable emaciation.
The GP will need to be aware of the increased risk of suicide particularly in those that have repeated relapses and inpatient admissions. Another forced admission might be a highly stressful event, and the patient might feel helpless and hopeless enough to consider self-harm, and the GP will need to bear this in mind during the consultation.
4.2.5 Community or Hospital Care?
The above should provide sufficient information on the clinical state to decide whether the patient needs admission then and there to a medical unit or whether it is safe to allow her to stay at home whilst further investigations are carried out. The latter will include baseline blood tests (Table 4.2) and an ECG. The results of these might indicate a higher risk than first thought on basis of physical examination. If this is the case, then the plan needs to change and the patient needs to be admitted to a medical unit.
Table 4.2
The profile of patient that will require admission urgently to medical unit
Feature | Comment | |
|---|---|---|
Symptoms | Dizziness, faints | Low BP, low glucose |
Vagueness, odd behaviour | Low glucose | |
Signs | Poor peripheral circulation | Risk in cold weather |
Loose skin around face | Indicates rapid weight loss | |
Hypotension (<90/60) Bradycardia (<60) | Especially if symptomatic | |
Weight and height: BMI | <13 or rate of weight loss >1 kg per week high risk | |
SUSS (sit-up, squat, stand) | Inability to stand from squatting or sit up from lying flat | |
Suicidal ideation | May be related to fear of admission | |
Investigations | Blood count, urea and electrolytes, liver function, magnesium, phosphate, calcium, glucose | Especially low potassium, low and falling phosphate, low glucose |
ECG | T-wave changes, prolonged QTc, longer than 450 ms |
The decision to admit might be met with resistance from the patient. The GP should be prepared for this as it is in keeping with the nature of the illness. The patient with severe anorexia nervosa will resist relinquishing control over her nutrition, and therefore weight, to health professionals fearing that they are only interested in “fattening” her up. Many patients use the Internet as their primary source of information and might have joined a forum run by others with severe anorexia nervosa. Many of these “Pro-Ana” websites are anti-treatment and anti-recovery and give advice on how to manipulate weight and how to argue against admission.
For some patients with severe anorexia nervosa, this is a repeat of past episodes of ill health and treatment on medical wards and/or eating disorder inpatient units. Many such patients tend to prefer not to repeat the experience though acknowledging that without the admission they would not have improved their physical and mental health or even be alive. The patients fear eating disorder inpatient units in particular because the unit has to take control of the patients feeding and physical activity and minimise the opportunity to compensate for weight gain. For some admission will be to a unit that is some distance from their family. Thus, it is understandable that the patient sensing that another inpatient admission is on the horizon might seek to avert this.
The GP needs to be prepared for the patient to talk throughout the consultation, urgently and with passion, to try and convince that admission to hospital will not be in her best interest: she might recall past aversive experiences, state that admission in the past was not helpful and in fact made her psychologically worse, plead to be given time and become personal, appealing to the GP’s compassion to understand her request.
Under this barrage of emotional pleading, the GP has to remain clinical in their approach and use their examination of the patient and clinical acumen to guide the decision how best to manage the patient. If, on the basis of physical health assessment, the patient requires urgent admission, then it is more likely to be to the medical unit. If the patient’s physical health risk is less urgent, then the GP is advised to discuss with the local psychiatry or eating disorder team regarding inpatient admission.
4.2.6 Interface Between Primary and Secondary Care
The outcome of the GP’s assessment may be (1) admit urgently to medical ward usually via A&E or (2) refer to the general psychiatry service which is often the gateway to specialist eating disorder services.
Figure 4.2 provides an algorithm for deciding on management. The GP does a risk assessment, and if the physical risk level is high, admission is sought. If the patient clearly needs the environment provided in a medical ward, then the A&E route is chosen. If not, the GP contacts the on-call psychiatrist and arranges for an assessment and an admission which may be to a specialist ED bed, a general psychiatry bed or, failing both of these, a medical bed. Admission to a medical or general psychiatric bed should be temporary, to await availability of a specialist eating disorder bed. In order to make these decisions, the GP will need to have access to a doctor, generally a psychiatrist, with experience and training in eating disorders, and, as we have indicated, such a doctor should always be available on call.
Fig. 4.2
Algorithm for managing a patient with severe anorexia nervosa
Following telephonic consultation between the GP and a member of the psychiatric or eating disorder team, there will be an agreed plan of action about admission and clarity about who will lead on the decision making: is it going to be left with the GP or will the psychiatric team take this over? If the latter, the senior psychiatrist on the team will be expected to take the lead and assess the patient urgently.
The patient might or might not be known to the psychiatric or eating disorder team, and this will be taken into account. If the patient is known to services, they may already be engaged with community mental health services, and there will be past experience of the issues that will have to be considered, e.g. does the patient live alone? Did they have a previous admission and its outcome? What are the patient’s strengths and what are the personal issues that affect their decision making?
Experience shows that it is wise for the senior psychiatrist to prepare for the consultation with the patient by assembling as many of the people involved in the patient’s care, professionals and carers, for a discussion following the assessment. Having everyone present at the one meeting allows for rapid sharing of information and for concerns to be aired and addressed. There is less opportunity for the patient to attempt to sabotage or split clinicians and carers if all are present for the discussion. If time is short, some of this can be done by telephone.
4.2.7 Use of Mental Health Legislation
A likely outcome of the above assessment is that the patient needs admission, either for medical stabilisation or to the ED unit for refeeding. The patient might agree or disagree with the decision but either way the management plan is best discussed with the professionals and carers who have attended. This is a highly emotionally charged time for all concerned. The patient is distraught at the prospect of inpatient admission and loss of autonomy and the carers feel torn between supporting their daughter’s wishes and their fear that their daughter will die if she is not admitted for treatment.
At all times, the senior psychiatrist will need to support the carers by speaking to them about their concerns and must not allow the patient to stop them from doing this. Confidentiality requirements do not prevent professionals from speaking to carers about their concerns and to give information about the medical condition of patients with severe anorexia nervosa in general terms. Moreover, as part of the Mental Health Act (MHA) assessment (or equivalent legislation elsewhere), the senior psychiatrist and the designated mental health worker (the approved mental health professional (AMHP) in the English system) will have to give this information and discuss it with the nearest relative anyway. Carers are often in a difficult position: confronted by a pleading upset relative, they will respond to the emotional ties as any person would. If there is more than one carer, they might disagree on what to do and this creates further stress to them. The senior psychiatrist must be empathic to their position and at the same time alert them in clear terms to the risk that their relative is at. It is often helpful to let them know that other carers have faced similar difficult situation: “this is something we often come across and we appreciate what a difficult place this is for you”. Many find this helpful to know as they feel disempowered and unable to think through what to do.
Related posts:
Management of the Really Sick Child or Adolescent with Anorexia Nervosa in Hospital: The Role of Child and Adolescent Mental Health Services
How Can the Adult Medical Team Work Optimally with the Adult Psychiatric Team to Help the MARSIPAN Patient?
Putting It All Together. What We Have Learnt, What We Need to Learn
Introduction: Problems Occurring in the Assessment and Treatment of Patients with Severe Anorexia Nervosa
Legal and Ethical Issues in the Treatment of Really Sick Patients with Anorexia Nervosa
The Role of the Paediatric Team in the Management of Young People with Severe AN
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
