Transitioning from CAMHS to CMHT -

Challenges and pitfalls.

Dr Clodagh Murphy Adult Autism and ADHD Service,

Maudsley Hospital, London

Royal College of Psychiatrists, ASD CPD update June 18, 2015

Improving ASD care: important for everybody

Monday 9 June 2014

Cost of autism more than cancer, strokes and heart disease Autism costs the UK £32bn a year

Costs of Autism Spectrum Disorders in the UK and the United States. Buescher, et al, JAMA Pediatrics. Online June 9, 2014.

Tuesday, Jun 10th 2014

Britain spends just £4m per year on autism research, compared to cancer (£590m) heart disease (£169m) or stroke (£32m).

Mental health in Young Adults with ASD • Co-morbidity common

• Persists with age (Simonoff et al 2013)

• High costs to Carers: (Cadman et al 2012)

- at transition - unmet needs - mental health - need for tx - ?impact carer/£

Mental health in Young Adults with ASD

Co-morbidity is common: • Depression • Anxiety (White et al, 2009,2013)

• Phobias • OCD (Russell et al 2013) • ADHD (Hofvander et al 09, Johnston et al, 2013)

DSM 5

ADHD in young adults with ASD 28-48% adults ASD + ADHD (Anckarsater et al 06, Hofvander et al 09)

Maudsley Adult Autism and ADHD Service • 37% ASD + ADHD fMRI - functional dysmaturation: across childhood & adulthood

Autism Research 6: 225–236, 2013

NICE Transition ASD (1)

• Local ASD teams; reassess at 14 - ? need for tx in adulthood

• Arrange for smooth transition to adult services; give info to the young person about tx/services they may need

• Timing of transition may vary locally - but should be completed by 18y. Variations should be agreed by both child and adult services.

• Comprehensive health and social care assessment: • Assessment: personal, educational, occupational, social

and communication functioning, and of any co-existing conditions, especially depression, anxiety, ADHD, OCD, or intellectual disability

NICE Transition ASD (2)

• 16 y +/complex needs: use CPA in England (care and treatment plans/Wales).

• Involve young person in planning (+ parent/carer as appropriate)

• Provide info about adult services to the young person, including their right to a social care assessment at age 18.

• consider a joint meeting (health & social care/child and adult services).

GP

Prescribing guidelines for adults with ASD in the UK

• no approved medication for treatment of: - core ASD symptoms (yet) - or co-morbid mental health difficulties • no clinical consensus prescribing guidelines(Broadstock et al, 2007).

• NICE recommends offer medication options informed by existing NICE guidance for co-morbid condition (eg ADHD or OCD) (NICE ASD 2012)

However: • Rx of meds(Hsia et al, 2014, Wong et al, 2014)

• polypharmacy; 34% in UK (Murray et al, 2014).

• with age; 73% of 18-21 year olds (Mandell et al, 2008).

Psychological Management in adults

• Limited evidence base(Spain et al 2015)

• RCT: CBT - OCD/anxiety. Maintenance - 1y (Russell et al, 2013)

• Psychoeducation(Wilson et al, in preparation)

• Social Skills • Mindfulness

Maudsley & Bethlem National Adult Autism Service

In-patient, day case & out-patient care Maudsley out-patient: one stop shop assessment:

• Screening questionnaires (self-report + parent) • Psychiatric assessment/ICD 10 • Structured behavioural observation (ADOS) • Collateral Hx (ADI-R) • Genetics

• Neuropsychology • Outreach assessments

Management: • Psychology (CBT/psychoed/social skills), Medication reviews • Psychiatric Genetics clinic

Recognition of ASD and mental health

• Autism Act 2009, Think Autism 2014 • NICE ASD 2011/2012: transition, adult services • Royal College GPs - autism clinical priority (2014) • Dr Carole Buckley RCGP ASD Clinical Champion (2014) • Evolving ASD services ? Needs of adults referred for ASD assessment

How best to configure ASD transition services?

Limited health services research in ASD Aims: investigate psychiatric co-morbidity in primary care patients referred to a national tertiary clinic for assessment of ASD in adulthood (Russell et al, in submission)

Retrospective review • N = 859 adults (645/75% males, age > 18) • referred to the Maudsley Adult Autism Clinic (2003-2011)

Assessment • neuropsychiatric interview/Consultant diagnosis (ICD-10) • Autism Diagnostic Observation Schedule (ADOS) • +/or Autism Diagnostic Interview-Revised (ADI-R)

Results N = 474 (55.2%) adults - diagnosed with ASD

ASD adults: • N = 257 (58%) ≥ 1 co-morbid ICD-10 diagnosis (typically

OCD/anxiety/depression/ADHD)

• OCD sig > in autism/Asperger’s (20%) vs atypical/PDDNOS (12%)

Non-ASD adults: N = 221 (57.4%) - other ICD-10 diagnosis (typically OCD/anxiety/depression/ADHD) Both groups: 5 x OCD, GAD, depression, ADHD vs UK adults (UK Psychiatric Morbidity Survey 2007)

ASD diagnosed in 55% of adults referred Psychiatric co-morbidity • in those diagnosed with ASD in adulthood

• co-morbidity in non-ASD adults

• Psychiatric co-morbidity – treatable

• Treatment (psychological/pharmacological) - adapted with specialist advice for

adults with ASD Clinical/health-economic implications for transition services development • Clear referral pathways • Effective screening • Accurate neuropsychiatric assessment & diagnosis • Evidence-based treatment

Implications for young adults in transition

ASD and transition from CJS ASD contact with the CJS as: • Victims of crime • Offenders • Misunderstandings - communication/behaviour • How many people with ASD offend? Unknown • ? ASD over-represented and under-recognised in the CJS • Feltham HMYOI - NAS accreditation • After release from prison?

Transition – older adults

Older adults with ASD: • Little investigation(Happe & Charloton, 2012 , Piven & Rabins, 2011)

• Transition middle to older adulthood • Physical/mental health • Social/£ - eg after death of family member/carer • Liason w/ GP/Older Adults teams

What types of transition will you need to consider for your service?

CAMHS to CMHT With evolving ASD services: 1st ASD diagnosis in adulthood Females From other services; CJS/prison/PD/ADHD/anxiety Older adults

Pitfalls

• Lack of evidence/guidelines • Ignoring ASD • Diagnostic-overshadowing/ignoring co-morbidity • Not planning transition • Not including pt in planning transition • Gender

Challenges

• Lack of evidence/guidelines • Lack of resources • Lack of ASD awareness • Consider co-morbidity in designing service (eg

ADHD/anxiety adapting your service) • Consider family co-morbidity • Balance independence, family change in dynamics,

accessing family support where appropriate

Scottish Transitions Forum - identified 9 problems

• Not using person centred approach • Not listening to young person in transition planning • Starting planning too late • Lack of support • Lack of info for young people/carers • Confusing legislation/policies • No co-ordination across services • Young people not being regarded as eligible • Confusing language

NAS Transition Tips for CMHTs

• Share your ASD knowledge/experience with colleagues • Learn about ASD • Don’t make assumptions - all people with ASD are different • Be aware of sensory input: noise/light/touch (busy waiting

rooms may be anxiety-provoking) • Keep your sentences short and simple. Give 1 instruction/

idea at a time. • You may be taken literally. Be careful what you promise, eg

a 9.30am meeting or 5 min break. Changes may cause distress/confusion.

NAS Transition Tips (2) • Allow ASD person time to process information (6 s).

• Write down main actions/outcomes of meetings and next

appt time. If possible send a reminder.

• Medication: give very clear instructions. Consider a dosette box with days/times clearly labelled.

• Arrange 3-way meeting with CAMHS.

Resources National Autistic Society: • www.autism.org.uk/living-with-autism/transition-to-adulthood

• Parent to Parent Service 0808 800 4106 (confidential phone support service for parents/carers) • Education Rights Service 0808 800 4102 (education rights and entitlements/transitions. UK wide) NICE 2011/2012

www.scottishtransitions.org.uk

Why is it important to think about ASD and transition?

• Lifelong neurodevelopmental disorder • Associated mental health problems; children and

adults(Simonoff et al, 2013)

• High costs (health, social, economic) • Accurately identify ASD/associated mental health problems • Accurately identify what’s not ASD • No tx for core ASD sx (yet) • Mental health problems - treatable. • Reduce cost/distress to individuals/families/society/CJS

ASD service development Development of high-quality, local evidence-based ASD services: Considerable work to be done

• GP training • Local CMHT training • Transition CAMHS/paeds to CMHT • Undergraduate/post-graduate training • Local & tertiary adult ASD services

UK CCGs – ASD

Thank you • Patients and their families • Maudsley Adult Autism and ADHD Service: Dene Robertson, Chris

Ohlsen, Grainne McAlonan, Neil Hammond, Sarah Blainey, Cristian Raggi, Emma Woodhouse, Karen Ashwood, Vladi Stoencheva, Rob Wichers, Susie Whitwell, Kiriakos Xenitidis, Stefanos Maltezos, Anastasios Galanopoulos, Michael Craig, Quinton Deeley, Mark Pitts, Thembani Dube, Antonia Dittner, Philip Asherson, Declan Murphy

• Profs Declan Murphy & Katya Rubia, MRC A.I.M.S Network • National Autistic Society

SLaM Adult Autism Spectrum and Related Disorders Service: www.national.slam.nhs.uk, email adhdasdadmin@slam.nhs.uk

or telephone 020 3228 4653