What s new in treatment of people with severe and complex eating disorders

Transcription

1 What s new in treatment of people with severe and complex eating disorders Dr Paul Robinson Russell Unit and St Ann s s Hospital drpaulrobinson@gmail.com Paper read at Eating Disorders Alpbach 2011, The 19 th International Conference, October 20 22, 2011, Alpbach, Tyrol, Austria Barnet Enfield and Haringey Mental Health Trust

2 Definitions Severe and Enduring Eating Disorder (SEED)

3 Is there a need for a new category? Professional emphasis on: Management of acute manifestations of eating disorders eg severe weight loss Cure using psychological treatments However Not everyone can/does access specialist treatment Even in the best studies, cure rates leave many people (>50%) still unwell What about the people who don t t get better (in our terms)? They may have SEED.

4 Severe and Enduring Eating Severity disorders: What is SEED? Affects several domains Requires complex intervention Incapacitating symptoms. High risk Duration Has continued for a certain time Duration beyond usual recovery time (asymptote)

5 NHS National Service Framework (NSF) 1999 People with recurrent or severe and enduring People with recurrent or mental illness,, for example schizophrenia, bipolar affective disorder or organic mental disorder, severe anxiety disorders or severe eating disorders,, have complex needs which may require the continuing care of specialist mental health services working effectively with other agencies.

6 SEED: Should Duration and stability be criteria?

7 Asymptote at appx 10 years (7% ill) Asymptote at appx 6 years (20% ill) Asymptote at appx 6 years (17% ill) Asymptote at 6 years (6% ill)

8 14% chronicity at 10+ years. No obvious asymptotic pattern.

9 Proportion still fulfilling criteria for AN at 10 years Community studies

10 How many people with SEED? People in Europe: 832m Women in Europe: 416m Females 15 39: 67.4m Anorexia Nervosa (females, 0.4%): 269,600 SEED (assuming 7%): 18, males=20759

11 Clinical Features of SEED

12 Problems of SEED: Physical Related to weight Fatigue Postural dizziness Hypothermia Amenorrhoea Insomnia Osteoporosis Pressure areas Sudden death Related to purging Dehydration Electrolyte imbalance Cardiac arrhythmia GI bleeding Reflux symptoms IBS Colonic atrophy

13 Problems of SEED: Psychological Related to eating Negative body image Food obsession Binge eating Less related to eating Obsessive compulsive symptoms Low self esteem Depression Perfectionism Suicidal thoughts and actions

14 Problems of SEED: Social Social isolation Unemployment Financial problems Clinical poverty Family problems

15 Other areas of difficulty Transport Occupation Finances Eating Accommodation Shopping

16 Carer s of patients with EDs High burden of care High level of depression/anxiety GHQ>threshold in 47% Predictors of carer distress High dependency of sufferer Stigma Negative caregiving experience Model Isabelle Caro's Mother Commits Suicide: MARIE CARO REPORTEDLY FEELING 'ENORMOUS GUILT Predictors of negative caregiving experience Shorter illness duration Lower levels of support Perception of high illness consequences Unhelpful caring styles Denial of problems Over controlling Over caring Excessive anxiety Graap et al 2008, Whitney et al 2007

17 Film Parents of a patient with SEED

18 Approaches to SEED Solutions (Adaptation) Robinson 2008 Problems (Handicap)

19 Theoretical basis: Recovery approach Seeing people beyond their problems their abilities, possibilities, interests and dreams and recovering the social roles and relationships that give life value and meaning (Slade 2010) cf: : Clinical recovery Symptomatology Social functioning Relapse prevention Risk management

20 The role of health care workers Therapeutic alliance Harm reduction Maximise health Establish criteria for admission Psychosocial rehabilitation Family support Life management skills (Yager 2007)

21 Therapeutic alliance Key worker Minimise staff changes Regular contact Agreed goals Staff member accesses supervision and referral

22 Harm reduction Medical Monitoring Optimize physical state Admission: Criteria for admission and discharge Robinson 2008

23 Family assessment and support Practical advice Allow expression of sadness, rage, guilt Answer questions Family workshops (Treasure, 2007, Yager 2007)

24 Psychological and psychiatric care Supportive care: Monitoring, review Therapy: CBT, dynamic therapy Medication: Antidepressants, antipsychotics

25 Social interventions Social network, Accommodation Finances, Transport Occupation/education Self help Support groups Befriender programmes Online helplines,, message boards, fora

26 Film A patient with SEED, currently an inpatient, describes her life

27 To conclude SEED is a new label for a familiar set of problems To recognize it is to give it attention It is not a message of hopelessness, more an indication that difficulties may be around for some time A medical approach emphasizing cure may be unhelpful A recovery approach maximizing quality of life for patient and family may be more helpful

28 Workshop 1 Find 2 neighbours.. People you don t t usually work with Debate the following proposition (1 for, 1 against, 1 observer): A patient with a long history of anorexia nervosa should be made to achieve a normal BMI even against his/her will 5 minutes each. 1. For 2. Against 3. Observer response Feedback to plenary

29 Workshop 2 Find 2 neighbours.. People you don t t usually work with Debate the following proposition (1 for, 1 against, 1 observer): The idea of SEED is dangerous because it implies giving up on recovery 5 minutes each. 1. For 2. Against 3. Observer response Feedback to plenary