Challenging Behaviours- Where next for our services? Dr Alick Bush

1. Challenging Behaviours- Where next for our services? Dr Alick Bush Clinical Director, Sheffield Health & Social Care Trust 9 June 2010 Alick.bush@shsc.nhs.uk

2. One minute synopsis • There are still too many people in inappropriate Out of Area placements as a consequence of the inability of local services to understand their challenging behaviour • Many have a poor quality of life and do not receive the specialist support they have been promised • Failure to provide this locally is a waste of our precious resources • Research literature shows what we should be doing to break this vicious cycle • So what should we be doing?

3. Why is it important to get it right? “Commissioning person-centred, cost effective, local support for people with learning disabilities (SCIE Knowledge Review 20)” July 2008 www.scie.org.uk What is known about the use of out of area placements (numbers, reasons for use), their quality and impact?

4. Out-of-area placements • In 2006, over 11,000 people with a learning disability were placed out of area • This is 34% of all people with a learning disability who are in Registered care • Numbers range from 63% (inner London) to 24% Yorkshire and Humberside • Most likely people: • CB, ASD, Mental Health, complex health, epilepsy, risk of offending Main reason?- nothing suitable is available locally

5. For the person Maintain contact with family Hard to become part of life in new area New placement might not suit person’s culture or experiences Little if any ‘checking’ from their home authority Residential schools- hard to plan for future move to adult provision Service delivery Development of new institutions 76% had no PCP 87% had no HAP Congregate settings Low level of access to psychology, psychiatry, behavioural support Low engagement in community activities More expensive than locally based services Big problems for receiving authority Problems with Out of Area placements

6. Spiral of lost resources to local services 1. Inadequate local provision for people who challenge 2. Need to purchase Out-of-area place 5. Increased numbers of people who challenge 3. Flow of ££’s from local services 4. Inadequate local provision for people who challenge

7. What does the literature tell us, & what are implications for local partnership working? • Effectiveness of behavioural approaches • Positive Behavioural Support (PBS) • Uptake of effective behavioural approaches • Person-centred planning/ approaches • Function-based interventions • Physical health • Breakdown of community placements • Congregate settings • Assessment and Treatment Units • Importance of front line staff

8. 1. Psychologically-based approaches • Best treatment outcomes happen when you have tried to understand why the behaviour occurs before you start to intervene- functional analysis (Grey & Hastings, 2005; Scotti et al, 1991; Didden et al, 1997, 2006) Service users should have access to range of staff who are able to understand CB as functional, and deliver interventions that take account of its likely function F.A. approaches should be used alongside other types of intervention

9. 2. Positive Behavioural Support (PBS) • Goal of enhanced Q of L, not just behaviour change • Improved Q of L is intervention & outcome measure • Establish purpose of behaviour (function) for person • Focus on triggers for behaviour • Development of new skills is key • Long-term focus and maintenance plans • CB is multiply determined, so multiple interventions • Non-punitive strategies • Combine proactive and reactive risk management strategies

10. Use of PBS in services • Positive Behavioural Support is effective, shows long-term maintenance, and generalises across settings (Carr et al, 1999) Service models should be designed on the principles of PBS We must develop a culture of routine evaluation of range of outcomes that include Q of Life

11. 3. Current uptake of behavioural approaches • Low use of behavioural technologies & high use of anti-psychotics in residential settings (Robertson et al, 2005) • Where they are used, it is usually informal (Feldman et al, 2004) • When systematic staff training in Applied Behavioural Analysis and development of behavioural support plans is introduced, 77% of people showed reduction by 70%, maintained for 2 years (McClean et al, 2005). Training in PBS/ABA must be built in and maintained systematically Anti-psychotics should not be used to manage behaviour

12. 4. Use of Person-centred planning • Better quality of life outcomes & relocation to community for people receiving PCP (Holbourn et al, 2004) • Valuing People Research Initiative- PCP gives better outcomes for those who receive it, but excluded groups are those with: CB, MI, communication difficulties, additional health problems People with complex needs (including CB) should be priority for PCP, not the last in the queue.

13. 5. Function-based interventions Interventions that are based on understanding “what is the purpose of this behaviour for the person?” and hence “how can we support the person to achieve the same goal, but without the need to use CB?” • Function-based interventions (eg FCT) are repeatedly shown to be highly effective, but often poor generalisation (Schindler & Horner, 2005) • Prevalence studies show ‘escape’ or ‘task avoidance’ is the most common function of CB (Hanley et al)- FCT can result in task avoidance! Good PCP’s and communication passports are essential Need to actively reinforce development of incompatible behaviours- promote engagement of activities

14. 6. Role of general health • Death By Indifference • Importance of discomfort as a ‘setting event’ (Regnard et al, 2007) • Association between pain and SIB in Cornelia de Lange syndrome (Moss & Oliver)- gastroesophageal reflux Good health screening, maintenance of health, Health Action Planning, use of pain/distress tools (eg DisDAT), communication passports, care pathways with general health Increased investigation of behavioural phenotypes- biology/environment interface

15. 7. Factors affecting breakdown of community placements Broadhurst & Mansell (2007)- study of homes where places had broken down v not broken down: • Good written guidance and intervention programmes • Staff supervision • Post-incident de-brief Those who select and fund placements should attend to the technical competence of the placement- can they do what they claim?

16. 8. Use of congregate settings • They generally cost more, make greater use of anti-psychotic medication and the use of physical restraint is higher than non-congregate Non-congregate (ie minority of residents show challenging behaviour) accommodation should be commissioned in community settings close to home Need greater incentives to support people to stay in home county

17. 9. Assessment & Treatment Units • The HCC audit!!! • Findings from 44 NHS areas (Mackenzie-Davies & Mansell, 2007): • Only 40% had discharge plans • Inappropriate admissions • Bed blocking • Poor relationships with other services • Hard to recruit & retain staff • Poor environment & location • Mix of residents • But…Asmus et al (2004)- short term highly specialist inpatient service- 66% showed reduction of 90% ATU’s need very clear purpose, explicit part of stepped-care model, highly specialist training in ABA++, with multi-disciplinary inputs

18. 10. Front line staff as change agents • Active Support (Stancliffe et al (2007); Beadle-Brown; Jones) leads to increased : • Staff : resident engagement • Community participation • Skills acquisition • Engagement in activities • Staff practices are mediated by front-line supervision Develop competencies of local leaders Clarify- what do staff believe they are expected to do? Use competency-based training models (Allen et al, 2008) Encourage active development of practice leadership- build in quality (eg Periodic Service Review- LaVigna)

19. Public Health Dept of Health website: “Public Health is concerned with improving the health of the population, rather than treating the diseases of individual patients” “If public health responsibilities are neglected it may be many years before the consequences can be seen; there is no immediate crisis. Of course there will be serious damage in the long-term but that could be 10 or 20 years in the future. Persuading any health system, whether in this country or elsewhere, to concentrate on the deep-seated causes of ill health is more difficult when the immediate pressures are so intense.”

20. Example of a Public Health approach- Tobacco (6 strands) 106,000 deaths per year in UK 9 million adults in UK still smoke • Smoke-free public places • Reduce exposure to second-hand smoke • NHS Stop Smoking Service • Media/ education campaigns • Regulate availability & supply- taxes • Reduce tobacco advertising & promotion

21. A ‘Public Health’ approach to service design • CB is often conceptualised as an individual problem requiring assessment & intervention, but must include prevention and long term reduction in prevalence (RCPsych, 2007; McGill; Emerson) • Analogy with tobacco or crime. Aim to ‘design’ it out. Apply to challenging behaviour: Sophisticated PCP approach to tailor environment to person’s unique characteristics Design-in individualised service supports Less individually-focused strategies, more care system-focused strategies

23. Challenging Behaviour: a unified approach RCPsych, BPS & RCS&LT (2007) • Promotes a multi-disciplinary bio-psycho-social approach • Guidance for best practice, built upon evidence-base • Aims to design in best support • 23 standards for service self-evaluation (RAG rating system and action planning)

24. 11 clinical standards • Operate in current legal framework • Documented risk assessments • Written MD assessments • Written integrated formulation • Interventions use person centred approaches • Written intervention plan • Crisis management plans in place • Effective care coordination • Trained support staff • Evaluate outcomes of interventions across broad range • Auditing of standards of care/interventions

25. 12 Service standards • Equality of access to local provision • Full range of services available • Competence of services matches people’s needs • Out of area placements reflect individual choice • Commissioned services support people locally • Access to local MD specialised advice • Access to highly specialised advice for most complex • Appropriate use of ATU’s • Availability of local MH services • Person centred planning in place • Process to review people who are out of area • Agreed commissioning strategy in place

26. Conclusions • Aim to re-invest current Out if City expenditure into local services • Take a Public Health approach to build-in effective approaches: this is likely to involve fundamental re-design in many areas, building upon current evidence-base • Positive Behavioural Support should be the preferred service model • How do you translate the standards into local practice for staff at the sharp end?

27. Brief References • RCPsych, BPS & RCS&LT (2007). Challenging Behaviour: a unified approach. RCPsych. • Holburn et al (2004). The Willowbrook Futures Project. AJMR, 109, 63 – 76. • Grey & Hastings (2005). Evidence based practice in ID and behaviour disorders. Current Opinion in Psychiatry, 469 – 475. • McClean et al (2005). Person focussed training. JIDR, 340 – 352. • Carr et al (1999). Positive Behavior Support: a research synthesis. AAMR. • Feldman et al (2004). Formal versus informal interventions for CB. JIDR, 60 – 68. • Robertson et al (2004). Quality and cost of community based residential services. AJMR, 332 – 344. • Asmus et al (2004). Use of short-term inpatient model to evaluate aberrant behaviour, JABA, 283 – 304.

28. References cont. • Schindler & Horner (2005). Generalised reduction of problem behaviour of young children. AJMR, 36 – 47. • Hanley et al (2003). Functional analysis of problem behaviour. JABA, 147 – 185. • Peck Peterson et al (2005). Blending FCT and choice making. Educ Psychol, 257 – 274. • Regnard et al (2007). Understanding distress in people with severe communication difficulties . JIDR, 277 – 292. • Broadhurst & Mansell (2007). Organisational and individual factors associated with placement breakdown. JIDR 293 – 301. • Mackenzie-Davies & Mansell (2007). Assessment & Treatment Units: an exploratory study. JIDR, 802 – 811. • Stancliffe et al (2007). Implementation & evaluation of Active Support. JIDR, 446 – 457. • Allen et al (2008). Using e learning to develop service-wide competencies. Tizard LD Review 3 – 9.