1. Care Adjustments in Hospital: Better Care Healthier Lives for People with Intellectual Disabilities. Jim Blair Jim.Blair@gosh.nhs.uk www.gosh.nhs.uk/intellectual-learning-disability

2. Hospitals can be scary places..

4. The focus will be on: Practical solutions to challenging problems Thinking differently acting creatively Alert flagging systems Reasonable adjustments – core and bespoke- how they improve care Collaborative partnerships

5. The focus will be on: Link Leads for ID within hospital and community across divisions and disciplines Engaging Experts by Lived Experience Education and training Supervision of staff Making LD Nursing in hospital a success

6. It’s MY life

9. About 25 people with learning disabilities die each week from causes of death wholly or partly amenable to good quality healthcare. 3 people each day Professors Glover and EmersonProfessors Glover and Emerson of the Improving Health and Lives Learning Disabilities Observatory Using data drawn from the Confidential Inquiry

10. My Role Together we can get it right Specialist advice for people with learning disability who may also have autism Assist with complex decisions Assessment of capacity Make reasonable adjustments Expert guidance Manage difficult situations Second opinion Build on existing work

11. My Role Provide 2 nd Opinion Lead on aspects of care Challenge poor practice in real time Education in action Band 6 or 7 liaison post - seek to influence change in practice by asking for RAs, tests, investigations, modeling good practice Consultant level – request and expect = a decision maker

12. Everybody’s Life Has Worth Beware of missing serious illness Find the best way to communicate Make reasonable adjustments Rely more on visual information Give more time for processing

13. Practical Solutions to Challenging Problems

14. Learning Disability Alerts Over 850 on system Prepare for a person coming in Make care adjustments Monitor outcomes and experiences Improve care

16. Reasonable Adjustments

18. How the passport changes care Filled in by people with learning disabilities and their supporter’s Provides a complete view of the person Not just about ill health Owned by the individual Personalises and dignifies care Enhances patient safety by providing information about a person who may not otherwise be able to tell health professionals

19. Adjusting Care -Think Differently ACT Creatively Double appointments Environmental changes e.g. dimmer switches, videos Clinics on Saturdays Learning disability specific clinics Health checks and patient held records Flexible appointment times No fixed visiting times Minimising waiting Increasing support for the person

21. A picture can say more than words Books Beyond Words- helping people understand what is happening in their health and in their lives www.booksbeyondwords.co.ukwww.booksbeyondwords.co.uk

22. Enhancing care and experiences

23. Learning Disability Link Leads within the Community and Hospital

24. LD Link Leads –across the hospital and community Rolling out of learning disability initiatives across the services Monitoring, evaluating and changing services through reasonable adjustments Providing colleagues with updates Assisting in prevention, admission and discharge to reduce re admissions

25. Engaging Experts by Lived Experience

26. Experts by Lived Experiences Engage people with LD and families in service design, accreditation, delivery, evaluation, evolution and staff training THEN we will get it the culture and care right

27. Being involved –Experts by lived experience Be on Committees Improve accessible information Educate and train staff Plan, develop and evaluate service developments and changes Be involved in research that leads to practical solutions / change

28. Collaborative Partnerships

29. Partnerships - Making an impact Other organisations across sectors Trial and share information Shaping practice together Creating models that work Being flexible less protective of ideas / concepts INNOVATION – BE CREATIVE

30. Education In action in real time Specific issues faced by people with learning disabilities and their families Reasonable adjustments Diagnostic Overshadowing Assessing a person’s understanding and capacity to consent to treatment Communicating without words Post qualifying courses

31. From here to where? Making Learning Disability Nursing a success in Hospital

33. Pre reg and post reg training Clear vision and plan Achievable outcomes Community and hospital buy in Clinical supervision Voice on the Board Commitment from commissioners

35. The Learning Disability Protocol for Preparation for Theatre and Recovery Discuss the patient's needs with them and their family/carers. Use ‘comforters’ to relax the patient pre op and in recovery. Document and handover to colleagues. a)Lower levels of noise and light b)Place the patient in a quiet area within recovery c)Ensure parents/carers are present and involved. d)Gradually recover observing how the patient is progressing If the patient is disturbed or distressed in Recovery: 1. Call an anaesthetist to use sedation to induce a relaxed, sleepier state. 2. Increase levels of sedation as required. Recover patients with learning disabilities slower than those without one For more information and advice www.gosh.nhs.uk/intellectual-learning-disability www.gosh.nhs.uk/intellectual-learning-disability

36. Influencing change Making an impact LD Alerts Education in action Audits How many people on your ward have a learning disability? Leadership in decision making / clinical practice Networks in service and beyond Conferences – Good Practice Events Think differently beyond learning disabilities Engage staff to create own care adjustments in their settings

37. “It is no use saying, ‘We are doing our best’ You have got to succeed in doing what is necessary.”“It is no use saying, ‘We are doing our best’ You have got to succeed in doing what is necessary.” Winston ChurchillWinston Churchill

38. Online accessible health information for people with autism and or learning disabilities