“Looking to the Future” Implications related to the use of restrictive practices for people with learning disabilities a

1. “Looking to the Future”Implications related to the use of restrictive practices for people with learning disabilities and dementia. Serena Jones Down Syndrome Nurse Specialising in Dementia Care and James Ridley Community Nurse Specialising in Assessment and Management of Complex Behaviour.

2. Aims • Identify ‘What is a restrictive practice’ and understand why this has implications. • Using a Human Rights framework to understand the legal and ethical issues. • Identify using a human rights based approach ways to reduce the need for restrictive practice.

3. What is Dementia?

4. What is a “Learning Disability”.

5. Prevalence Comparison. British Psychological Society, Royal College of Psychiatrists, 2009

6. Recognising Dementia! The Challenge!

7. Exercise “What are the difficulties in assessing a person with a learning disability”

8. Difficulties Presented; • Learning Disability. • Difficulty with living skills. • Health problems – mimic symptoms. • Communication difficulties. • Unreliable history. • Generic assessments. • Misdiagnosis. • Janicki, Dalton, (1999)

9. Agitation, Anxiety, Irritability/motor restlessness, Wandering/pacing, Aggression, Shouting, Night-time disturbances, Psychosis/mood disorders. Sexual disinhibition, Eating problems Ballard, O’Brien, James, Swann, (2003), Behavioural and Psychological Symptoms of Dementia (BPSD).

10. Challenging behaviour may be seen as an inevitable aspect of dementia, (Stokes and Gouldie, 1990) Challenging behaviour is not necessarily an inevitable consequence of the condition. Kerr (2007) BPSD and People with Learning Disabilities

11. Management of BPSD. “The use of restraint amongst institutionalised elderly with dementia and problem behaviour not only remains widespread, but also appears to be accepted as inevitable” Testad, Aasland, Aarsland (2005)

12. Restraint! • “The intentional restriction of a person’s voluntary movement or behaviour” • Counsel and Care (2002). “RESTRAINT is a RESTRICTIVE PRACTICE”

13. Exercise Name some forms of “Restrictive Practice”

14. Forms of Restrictive Practice • Chemical • Mechanical • Physical • Psychological • (RCN, 2008)

15. Exercise What might the harmful effects of having a restrictive practice applied be?

16. Depression Cognitive decline Emotional isolation Confusion Agitation Increased morbidity and mortality Injury Strangulation Loss of skills Reduced appetite Cardiac stress Muscle wastage Incontinence Watson (2001) Potentially harmful effects.

17. Risk Groups • People who are perceived as difficult or threatening. • People who cannot be persuaded to do what others wish them to do, therefore causing a management problem. • People who are less physically or mentally able CSCI (2007)

18. Additional risks for people with learning disabilities. • Physical disabilities. • Epilepsy • Cardiac difficulties • Obesity • Risk of fracture • Spinal instability • Respiratory problems • Mental Health problems • Pain • Anti-psychotic drugs . • Leadbetter (2002)

19. Mental Capacity Act, 2005 • Restraint is only permitted; • To prevent harm to the incapacitated person, • The restraint used is proportionate to the likelihood and seriousness of the harm.

20. Human Rights Based Approach. “A human rights based approach offers one method for facilitating positive risk management”. • Whitehead, Greenhill, Carney, (Print pending.)

21. Human Rights Based Approach. • FREDA Principles; • Fairness • Respect • Equality • Dignity • Autonomy

22. Human Rights Based Approach • Proportionality and balancing the rights of the service user when considering positive risk management should be integral to whichever service a person works in. • Whitehead, Greenhill, Carney, (Print pending.)

23. Liverpool Project Meeting the health needs of people with Down’s syndrome

24. Human Rights Risk Screen. • Starting Block! • The tool questions whether appropriate person centred interventions are in place. (Greenhill, Whitehead, Carney, print pending)

25. Health Needs Assessment/Health Action Plans “Life Stories” “Person Centred Plans” Non-aversive behavioural assessments. Pain Management. Environmental assessment. Medication Reviews Capacity assessments Communication assessments. Advance Directives Key Areas.

26. Case Example 1 • D, who has a visual impairment and scoliosis, kept colliding with people and furniture then falling, this resulted in injuries. The staffing levels at her home were not sufficient to support her when walking round her home so she was strapped into her wheelchair. • Joint committee on Human Rights (Seventh Report), 2008.

27. Case Example 2 • K a middle-aged woman with Down's syndrome threw a cup at a wall in her care home on the first anniversary of her mother's death. Instead of trying to find out why she had thrown a cup, the woman was prescribed anti-psychotic medication. • Joint committee on Human Rights (Seventh Report), 2008.

28. Barriers • “Nurses are rewarded for bureaucratic efficiency rather than for the quality of care they provide.” • Burnard and Chapman (2005)

29. Something to Remember! • “The only legitimate reason for using restraint is therapeutic – that is, to ensure the safety and well being of the resident or patient” • Braun and Lipson (1993).

30. Conclusion. • “If all you have in your tool box is a hammer, all the world looks like a nail.” • Abraham Maslow

31. Acknowledgments Grateful thanks for their support and patience, Dr Richard Whitehead (Clinical Psychologist, Olive Mount) Dr Beth Greenhill (Clinical Psychologist, Olive Mount)

32. Useful Reading • Abbey, J., Piller, N., Bellis de, A., Esterman, A., Parker, D., Giles, L. & Lowcay, B. (2004) The Abbey pain scale: a 1-minute numerical indicator for people with end stage dementia. International Journal of Palliative Nursing, 10, 6 - 14. • Deb S., Clarke D. & Unwin G. (2006) Using medication to manage behaviour problems among adults with a learning disability: Quick Reference Guide (QRG), University of Birmingham, MENCAP, The Royal College of Psychiatrists. • Department of Health (2008) End of Life Strategy; Promoting high quality care for all adults at the end of life. TSO (The Stationery Office). • Dodd, K., Kerr, D. & Fern, S. (2006) Down’s Syndrome and Dementia Workbook for Staff. Down’s Syndrome Association. Down’s Syndrome Association. • Dodd, K., Turk, V. & Christmas, M. (2002) Resource Pack for carers of adults with Down’s Syndrome and dementia. BILD Publications. • Evenhuis, H.M., Kengen, M.M.F., & Eurlings, H.A.L. (2007). Dementia Questionnaire for People with Learning Disabilities (DLD). UK adaptation. Harcourt Assessment. • Holland, A.J. (2004) Down’s Syndrome and Alzheimer’s Disease: A guide for Parents and Carers.Down’s Syndrome Association.

33. Useful reading. • Kerr, D. (1997) Down’s Syndrome and dementia: a practitioner’s guide. Venture Press. • Kerr, D. (2007)Understanding Learning Disability and Dementia: Developing Effective Interventions.Jessica Kingsley Publishers. • Kerr, D., Cunningham, C. & Wilkinson, H. (2006) Responding to the Pain Needs of People with a Learning Disability. York Publishing Services. • Prasher, V.P. (2005) Alzheimer’s Disease and Dementia in Down’s Syndrome and Intellectual Disabilities. Radcliffe Publishing. • Thomas, K. & Department of Health (2005) Gold Standards Framework. Department of Health. • Watchman, K. (2006) Keep Talking about dementia: Information for Siblings and professionals about Down’s Syndrome and dementia. Scottish Down’s Syndrome Association.

34. Useful websites • www.BILD.org.uk • www.cbf.org.uk • www.ld-medication.bham.ac.uk • www.dsscotland.org.uk • www.alzheimers.org.uk • www.pss.org.uk

35. References • Ballard, C, O’Brien, J, James, I, Swann, A, (2003), Dementia; Management of the behavioural and psychological symptoms, Oxford University Press, Oxford. • Braun, J, Lipson, S, (1993), Toward a restraint free environment; reducing the use of physical and chemical restraints in long term and acute care settings, Health Profession Press, Sydney. • British Psychological Society, Royal College of Psychiatrists, (2009), Dementia and people with learning disabilities, BPS/RCP, London • Burnard, P, Chapman, C, (2005), Professional and ethical issues in nursing, Ballierre Tindall, Edinburgh. • Care Quality Commission (nee Commission for Social Care Inspection), (2007), Rights, risks and restraints; An exploration into the use of restraint in the care of older people, CSCI, Newcastle Upon Tyne. • Counsel and Care, (2002), Showing restraint; challenging the use of restraint in care homes, Counsel and Care UK, London. • Home Office (2005), Mental Capacity Act (2005), HMSO, London. • House of Lords, House of Commons, Joint Committee on Human Rights, (2008), A life like any other? Human rights of adults with learning disabilities, Seventh Report, HMSO, London. • Janicki, M, Dalton, A, (1999), Dementia, Aging, and Intellectual Disabilities: A Handbook, Routledge, New York.

36. References • Kerr, D, (2007), Understanding Learning Disability and Dementia, Jessica Kingsley, London. • Leadbetter, D, (2002), Good practice in physical intervention, In Allen, D, (ed), Ethical approaches to physical interventions, BILD, p114-133. • Royal College of Nursing, (2008), Lets talk about restraint: Rights, Risks, and Responsibilities, RCN, London • Stokes, G, Gouldie, F, (1990), Working with dementia, Winslow Press, Bicester. • Testad, I, Aasland, A, M, Aarsland, D, (2005), The effect of staff training on the use of restraint in dementia: a single-blind randomised controlled trial, International Journal of Geriatric Psychiatry, 20, 587-590. • Watson, R, (2001), Restraint; its use and misuse in the care of older people, Nursing Older People, 13, 3, 21-25. • Whitehead, R, Carney, G, Greenhill, B, (2009), Encouraging positive risk management; Supporting “A life like any other” using a Human Rights Based Approach, In, Logan, C, Whittington, R (eds), Self-harm and Violence: Best Practice in Managing Risk, print pending.