1. Working with People with Learning Disabilities Directed Enhanced Service (DES) Learning Disabilities 2013/14 Appendix 5 Presented by Helen Grant Community Nurse Professional Lead Helen.grant@shsc.nhs.uk Anne Hutchinson, Health Facilitation Coordinator Ann.hutchinson@shsc.nhs.uk

2. A significantly reduced ability to understand new or complex information, to learn new skill (impaired intelligence with an IQ below 70) with:- A reduced ability to cope independently (impaired social functioning) Which started before adulthood, with a lasting effect on development What is a Learning Disability ?

3. MILD (IQ50-69) MODERATE (IQ35 -49) SEVERE(IQ20-34) PROFOUND (IQ<20 ) Classification of Learning Disability

4. Nationally it is estimated 2-3% of the population have a learning disability. Estimates suggest: 210,000 people with severe & profound learning disabilities 1.2 million people with mild/moderate learning disabilities Per GP practice of 2000 patients – average of 40 people with learning disabilities Prevalence

5. Legislation which should make health services non discriminatory and safe Disability Discrimination Act Disability Equality Duty Safeguarding Adults Human Rights Act Mental Capacity Act Deprivation of Liberty

6. The DES..why now? Evidence of Poor health and discrimination Disability Rights Commission “Equal Treatment: Closing the Gap” found people with learning disability died ten years younger than other people of preventable health conditions Mencap report “Death by Indifference” reports the experience of the treatment and deaths of 6 people with learning disability in hospital Castlebeck -The regime of abuse at the Winterbourne View unit, in Hambrook, near Bristol, was exposed by the BBC Panorama programme. Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) March 2013

7. What does the Des hope to achieve To provide an annual health check on people with moderate to severe learning disability who are 18 years or older this year Identify unmet health needs and health inequalities To improve the contact between primary care and people with a learning disability. To put individuals and their families more in control of their health

8. The Cardiff Health Check This is a seven section document Uses Yes/No tick box format Asks a series of questions in relation to the health of the individual Health Promotion Chronic Illness and Systems Enquiry Epilepsy Behaviour Physical Examination Syndrome Specific Medication An updated version of this is available on the RCGP and signpostsheffield website.

9. Cardiff Health Check for People with a Learning Disability Date Name Marital status Ethnic origin Principal carer Age Sex Address ______________________________________________________________________________________ Weight (kg/stone)………………..……… Height (meters /feet) …………………… Blood Pressure ………………………… Urine Analysis …………………………. Smoke (per day) …………………………. Alcohol (units per week) ………………. Body Mass Index Cholesterol/ (weight in kg / height in m2) ………………… Serum lipids ……………………….… _____________________________________________________________________ Immunization - People with learning disability should have the same regimes as others and the same contra indications apply. (please circle) Tetanus in last ten years?Yes No If no has tetanus been given?Yes No Has influenza vaccine been given?YesNo Is Hepatitis B status known? YesNo Result? ………………………………………………………………………...…… ________________________________________________________________________ Cervical screen – people with a learning disability have same indications for cervical cytology as others. Is a smear indicated?YesNo If yes when was last smear?..…/……/……When is next due? ……/……/…… What was the result? ………………………………………………………………… ________________________________________________________________________ Mammography – this should be arranged as per local practice.

10. Improving Health and Lives Learning Disabilities Observatory Is made up of the following organisations:- Nepho North East Public health Observatory NDTi National Development Team for Inclusion CeDR Centre for Disability Research Provide information and statistics on effects of the health checks by region. Other health information relating to people with a learning disability is also available on the website www.nepho.org.uk Health Checks for People with Learning Disabilities An Audit Tool (including indicators of success)

11. Flipchart activity Discussion – which health issues are people with a learning disability most likely to experience.

12. Die early Die from breathing problems Have heart problems Be overweight, and eat badly Have certain cancers Have epilepsy Have Autism Be mentally ill Health Issues More Likely To:

13. Be given psychotropic drugs Have a physical disability Be deaf or blind Have dementia Have communication problems Have thyroid dysfunction Have dental problems. Use medical hospital services Be discharged quickly Health Issues More Likely To:

14. Have a health check Be screened for cancer Use surgical hospital services Have sight tested Have hearing tested Receive pain relief Get Health Promotion advice Be included in consultations/ patient forums Health Issues Less Likely To:

15. Health Action Plans Simply a plan which identifies WITH the person The health need The action to be taken Who will help the person do it The date when the plan will be reviewed Any further actions to be taken

16. Capacity and Consent

17. How do you assess capacity? Get into small groups Discuss how you do this Identify any issues Feedback and discussion

18. Mental Capacity Act 2005 “Provides a statutory framework to empower and protect vulnerable people who may not be able to make their own decisions. It makes clear who takes decisions in which situations and how they should go about this. It enables people to plan ahead for a time when they may lose capacity.” Implemented 1 April 2007 For more information go to the GP Commissioning intranet. http://www.sheffieldccg.nhs.uk

19. 5 Key Principles 1. Presumption of capacity, unless proved otherwise. 2. Right to be supported to make decision, before concluded they can not make own decision. 3. Right to make “eccentric or unwise” decisions. 4. Best interests – any act done for a person without capacity must be “in their best interests”. 5. Least restrictive intervention.

20. Defining mental capacity Ability to make decisions or take actions affecting daily life The burden of proof is on any person who asserts that the other person lacks capacity. They will have to show, on the balance of probabilities, that the individual lacks capacity to make the decision in question. The two stage test 1. Impairment of, or disturbance in functioning of, person’s mind or brain? If so, 2. is the impairment sufficient that they lack capacity to make the decision.

21. Assessing lack of capacity (part 2 of two stage test) Testing whether someone is unable to make a specific decision (4 questions of functional test). 1. Understand the information relevant to the decision (understand the consequences of options) 2. Retain that information 3. Weigh up that information as part of a decision- making process, OR 4. Communicate the decision A ‘No’ on any = lack of capacity.

22. Best interests Everything done for person who lacks capacity must be in their “best interests” Section 4 sets out a checklist of steps and factors to be considered (see next slide) Consideration must be given to whether there are other options that may be less restrictive of the person’s rights. The decision maker must reasonably believe that any action intended to restrain a person who lacks capacity is necessary to prevent harm to the person and a proportionate response to the likelihood of seriousness of harm.

23. Best Interest Checklist Equal consideration and non-discrimination Considering all relevant circumstances. Regaining capacity Permitting and encouraging participation Special considerations for life-sustaining treatment. The person’s wishes & feelings, beliefs & values. The views of other people.

24. What is restraint ? The Oxford Dictionary defines “restraint” as “to check or hold in; to keep in check or under control; keep down” Physical restraint Mechanical restraint Chemical restraint Restricting individuals’ choices Withholding information And more………

25. Easy English Guide

26. How do you support people with a learning disability to complain Are your leaflets accessible? Have you identified someone who can help? Is your feedback communicated in a way that that the person can understand ?

27. Working Together Community Learning Disability Teams (CLDT) Intensive Support Service (ISS) Respite Care Services The Sheffield Case Register

28. Further information www.signpostsheffield.org.uk Deprivation of Liberty Safeguards hotline – 0114 205 3783 (Mon-Fri 9.30-4.00) Mental Capacity Act Code of Practice – http://www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf http://www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf Deprivation of Liberty Safeguards Code of Practice - http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publi cationsPolicyAndGuidance/DH_085476 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publi cationsPolicyAndGuidance/DH_085476 Alternatives to Restraint – Dr Zara Clarke – 0114 271 6939 or Anita Winter 0114 271 6741 http://www.gmc-uk.org/learningdisabilities http://www.bris.ac.uk/cipold/fullfinalreport.pdf