STOMP IN PRIMARY CARE Member of PBS Team Monkwearmouth

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

2. 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

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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

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

11. 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

12. 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 non-pharmacological 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., McGill, 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.

13. https://www.youtube.com/watch?v=1l4Il65WyW8

14. 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

15. 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.

16. 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.

17. 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, SR2 0NB Fax 0191 566 7200 Emailirs@ntw.nhs.uk

18. 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

19. RESULTS TO DATE • 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

20. RESULTS TO DATE

21. 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

22. CASE STUDY

23. USEFUL RESOURCES - GASS

24. RESOURCES • Rc Psych Prescribing Guidance • http://www.rcpsych.ac.uk/systempages/gsearch.aspx?cx=005217297982068972824%3aqhx0tmhjcsy&cof=FORID%3a9&q=stomp • VODG Website • https://www.vodg.org.uk/campaigns/stompcampaign/ • British Psychological Society • https://www1.bps.org.uk/system/files/user-files/DCP%20The%20Faculty%20for%20People%20with%20Intellectual%20Disabilities/public/BPS%20website%20STOMP%20summary.pdf • BILD PBS Video • http://www.bild.org.uk/capbs/pbsinformation/introduction-to-pbs/ • NHS ENGLAND STOMP PAGE • https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/ • Challenging Behaviour Foundation • http://www.challengingbehaviour.org.uk/ • You Tube STOMP Videos • https://www.youtube.com/playlist?list=PL4shZXQ9YqmIFPJX02IWJvhHqdrMf_EkO • GP Guidance document • https://www.england.nhs.uk/wp-content/uploads/2017/07/stomp-gp-prescribing-v17.pdf • Frith prescribing guidelines • Maudsley Prescribing Guidelines

25. 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/s12939-016-0296-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. 12th 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

26. REFERENCES • Deb S et al. The effectiveness of antipsychotic medication in the management of behavioural problems. J IntellDisabil 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. Lancet2008.; 371: 57-63 • NICE (2015) Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges - guidance (NG11) 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.

27. THANK YOU