STOMP IN PRIMARY CARE Member of PBS Team

STOMP IN PRIMARY CARE Member of PBS Team Monkwearmouth Dave Gerrard – NTW Pharmacist Learning Disability and Pharmacist lead STOMP programme NHS England

AIMS • To raise awareness of STOMP • To explain medication use in relation to behaviour thought to be challenging • To introduce alternatives to medication – Positive Behavioural Support • To identify the role of primary care • To demonstrate a STOMP review process for primary care

ISSUES 1. MENTAL ILLNESS – Similar prevalence to general population – Diagnostic uncertainty and overshadowing 2. PHYSICAL ILL HEALTH – Multiple co-morbidity – Reduced life expectancy 3. BEHAVIOUR THOUGHT TO BE CHALLENGING – Historical reliance on psychotropics

CONSEQUENCE • Risk of polypharmacy – Psychotropic medication for mental illness and behaviour that challenges – Multiple physical health medications – Multiple anti-epileptic drugs (AED) with huge interaction potential – Reliance on PRN medication – Lack of medication challenge – Lack of engagement with the review process

BEHAVIOUR • 2015 guidance • Non-pharmacological as first line • Add in medication if this fails – antipsychotic only • Never as monotherapy • Lowest dose for the shortest time • Robust review • Monitoring as all antipsychotic use • One RCT Tyrer 2008 Haloperidol v Risperidone v Placebo • Limited other evidence • Mode of action (? ) – Sedation – Reduced drive • All prescribing off-label • Unusual regimes – Lithium for aggression – Zuclopenthixol for aggression – Naltrexone for self injurious behaviour – Bumetanide for autism

WHAT IS STOMP • Response to Winterbourne View • NHS England led • Challenge to medication use in learning disability and autism • Prevent new cases • Review historical cases • Primary and secondary care issue

AIMS OF STOMP • Quality of life improvement • Medication challenge • Link to physical and mental well-being • Use of alternatives to medication • Collaborative overview of care • Transforming care agenda

WHO’s INVOLVED • Pledge signed by all Royal Colleges • Pledge for Social care providers • Pledge for Healthcare providers • Links to CBF, support groups, advocates • Links to CCGs, CQC, SOADs, • Potential CQUIN target

RESPONSES • Provide information about STOMP • Work with carers/family • Identify correct diagnosis • Holistic treatment • Monitor outcomes regularly • Best practice with consent • Carry out audits • Support national surveys • Develop training for ALL prescribers

YOUR ROLE 1. Know your numbers – Link to NECS, Pharmicus – Audit your records – Case note review 2. Prioritise cases – Needing referral (PBS or STOMP) – Watchful waiting – GP to undertake with advice – GP to undertake 3. Raise STOMP awareness – Within the practice – With patients/carers

STOMP REVIEW Background • Reason for medication • Past attempts to reduce • Physical health information • Target behaviours with outcome measures • Availability of alternatives (PBS) Opinions + Concerns • Person taking medication • Carers and family • Explore fear of challenge • Advice and reassurance • STOMP literature and case studies • Link to CBF

• In the past people with learning disabilities who presented with behaviours that challenged were prescribed psychotropic medication. • NICE guidance for challenging behaviour and learning disabilities (NICE, 2015) recommends nonpharmacological approaches, such as Positive Behavioural Support (PBS), to help us understand behaviour before medication is considered. • PBS is a framework that helps us understand the reasons why someone might behave in a particular way. • It focuses on making changes to the environment to better meet people’s needs and teaching people skills to communicate what they need in different ways. • The overall aim is to help people with a learning disability and/or autism live their best life (Gore et al 2013). National Institute for Health and Care Excellence (2015) Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges (NICE Guideline 11) Gore, N. J. , Mc. Gill, P. , Toogood, S. , Allen, D. , Hughes, J. C. , Baker, P. , Hastings, R. P. , Noone, S. J. , and Denne, L. D. (2013) ‘Definition and scope for positive behavioural support’, International Journal of Positive Behavioural Support. 3 (2), 14 -23.

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We are part of a community team based at Monkwearmouth Hospital. The team is multidisciplinary and includes: Occupational Therapy PBS nurses as well as specialist physical and mental health nurses Psychology Speech and Language Therapy Learning Disability Psychiatry, Physiotherapy Specialist pharmacy

WHAT DO WE DO? • We conduct functional assessment to try and find out why someone is behaving a certain way. • We involve the person, their carers and others who are important to them and a variety of different methods to gather the information needed. • We use this information to develop a plan with the person and/or their carers which aims to improve quality of life and reduce the need for the person to use behaviours which challenge. • We are data driven – this means we collect different types of evidence to help us check the plans are working to improve quality of life.

WHEN TO REFER If somebody attends your surgery with behaviours that challenge refer to PBS. If somebody attends your surgery who is a candidate for medication reduction and you feel confident and resourced to do this then proceed. If you do not feel confident or do not feel that you have the resources to do so, refer to PBS.

HOW TO REFER Contact the Initial Response Service and ask for a referral to the Positive Behaviour Support Team. You might want to mention STOMP medication reduction as part of this. Call 0303 123 1145 GP line 0191 566 7355 Write Initial Response Service, Barton Centre, Hopewood Park, Ryhope, Sunderland, SR 2 0 NB Fax 0191 566 7200 Email irs@ntw. nhs. uk

PROCESS • Behaviour – Type – Data – Intervention BSP • Medication – – Understanding Indication Benefits Side effects GASS • Physical Health – – Co-morbidity Medication related Abnormal bloods Link to behaviour • Environment – – Staff turnover Staff training Other service users Seasonal factors

RESULTS TO DATE STOMP REVIEWS 29 30 25 25 20 17 14 15 PBS NO-PBS 8 10 6 5 2 5 4 2 1 0 e as In cr e D ST OP PE n io ct du re % 75 re % 50 re % 25 du du ct ct io io n n d te ar st No t be r 0 Nu m • Each client has 5 reviews on average to discontinue • 56% completely free of medication with PBS support • 25% undergoing reduction without incident • 15% needed to be restarted/increased • One SMI uncovered • Average in research to date 45% (our figure 84%) • The difference is PBS

RESULTS TO DATE REDUCTION IN SIDE EFFECTS TYPES OF MEDICATION 70 Amisulpride 4% 66 60 Antidepressant Benzo 4% 4% 50 Risperidone 48% 40 38 Aripiprazole 26% 28 30 24 Olanzapine 4% 20 Quetiapine 9% 20 20 20 15 12 8 10 4 Risperidone Amisulpride Quetiapine Benzo Olanzapine Antidepressant Aripiprazole 0 Weight Sedation EPSE Pre reduction Dizziness Post reduction GI 4 Prolactin

CASE STUDY • Ellie is 29 and has taken Risperidone for 5 years. • Autism and mild learning disability (reasonable verbal communication with no reading skills) • Challenging behaviour – aggression and anxiety with occasional self harm – head banging • Lives in 24 hour specialist care with a core team who have changed personnel recently • Lives with one other client who is unsettled • PBS input until recently to update the behavioural support plan • Good physical health – no issues of note • Prolactin raised at 1457 • Medication – Risperidone 1. 0 mg twice a day – One unsuccessful attempt to withdraw two years ago

CASE STUDY Behavioural impact of medication reduction 45 36 45 40 35 30 25 10 6 20 15 10 5 0 Aggression Head banging BEFORE POST

USEFUL RESOURCES - GASS

RESOURCES • Rc Psych Prescribing Guidance – http: //www. rcpsych. ac. uk/systempages /gsearch. aspx? cx=00521729798206897 2824%3 aqhx 0 tmhjcsy&cof=FORID%3 a 9 &q=stomp • • You Tube STOMP Videos – https: //www. youtube. com/playlist? list= PL 4 sh. ZXQ 9 Yqm. IFPJX 02 IWJvh. Hqdr. Mf_E k. O • GP Guidance document – https: //www. england. nhs. uk/wpcontent/uploads/2017/07/stomp-gpprescribing-v 17. pdf BILD PBS Video – http: //www. bild. org. uk/capbs/pbsinfor mation/introduction-to-pbs/ Challenging Behaviour Foundation – http: //www. challengingbehaviour. org. u k/ British Psychological Society – https: //www 1. bps. org. uk/system/files/ userfiles/DCP%20 The%20 Faculty%20 for%20 People%20 with%20 Intellectual%20 Disa bilities/public/BPS%20 website%20 STO MP%20 summary. pdf NHS ENGLAND STOMP PAGE – https: //www. england. nhs. uk/learningdisabilities/improving-health/stomp/ VODG Website – https: //www. vodg. org. uk/campaigns/st ompcampaign/ • • Frith prescribing guidelines Maudsley Prescribing Guidelines

REFERENCES • • • Emerson E, Hatton C, Baines S, Robertson J. The physical health of British adults with intellectual disability: cross sectional study. International Journal for Equity in Health 2016; 15: 11 DOI 10. 1186/s 12939 -016 -0296 -x. Hatton C, Emerson E, Robertson J, Baines S. The mental health of British adults with intellectual impairments. Journal of Applied Research in Intellectual Disabilities. 2015 early view 10. 1111/jar. 12232. Bhaumik S, Branford D. The Frith Prescribing Guidelines for Adults with Learning Disability. London: Taylor&Francis, 2005. Taylor, D. , Paton, C. and Kapure, S. (2015) The Maudsley prescribing guidelines. 12 th edn. London: Informa Healthcare. Department of Health: Transforming care: A national response to Winterbourne View Hospital. (Dec 2012). https: //www. gov. uk/government/uploads/system/uploads/attachment_data/file/ 213215/final-report. pdf Rojahn et al. The Behaviour Problems Inventory: An instrument for the assessment of self-injury, stereotyped behaviour, and aggression/destruction in individuals with developmental disabilities. The Journal of autism and developmental disorders. 2001; 31: 577 -588

REFERENCES • • • Deb S et al. The effectiveness of antipsychotic medication in the management of behavioural problems. J Intell Disabil Res 2007; 51: 766 -777 Tyrer P et al. Risperidone, haloperidol and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial. Lancet 2008. ; 371: 57 -63 NICE (2015) Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges guidance (NG 11) National Institute for Health and Care Excellence. www. nice. org. uk [Accessed 09/07/2015 WHO (1992) The ICD-10 classification of mental and behavioural disorders. Clinical descriptions and diagnostic guidelines. World Health Organization. www. who. int Tyrer P et al. Drug treatments in people with intellectual disability and challenging behaviour. BMJ 2014; 349: 4323 Glasgow Antipsychotic Side effect Scale (GASS) Waddell L. and Taylor M. (2008) A new self-rating scale for detecting atypical or second-generation antipsychotic side effects. Journal of Psychopharmacology 2008; 22(3): 238 -243.

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