Healthcare for People with Learning Disability in Primary Care in England

1. Healthcare for People with Learning Disability in Primary Care in England Jill Rasmussen Moat House Clinic; GPwSI LD Surrey Primary Care Trust; Chair RCGP LD Group

2. Overview • Where are we coming from? • Where are we going? • How are we getting there? • Other Initiatives / Resources

3. Where are We Coming From ? • In 2001 Valuing People proposed annual health checks • The initiative was then promised in the Department of Health 2004 strategy document • Mencap have been campaigning for annual health checks for people with a learning disability in ‘Death by indifference' and ‘Treat me right!‘ • Sept 2008 the Government agreed to provide annual health checks to people with learning disabilities in England • The proclamation emerged as part of ministers' response to a damning government-commissioned independent inquiry into healthcare for people with learning disabilities published in July, carried out by Jonathan Michael

4. Annual health Checks - Wales • Have been provided to some extent since 2003 • In April 2006 primary care based, annual health checks for adults with LD on local authority registers, were introduced as a directed enhanced service (DES) • April 2007 Welsh Assembly Government funded a proposal to monitor and evaluate the initiative over a 3 yr period • Submitted by the National Public Health Service (NPHS) and Welsh Centre for Learning Disabilities (WCLD) • First Progress Report Jan 2008

5. Annual Health Checks Wales: Proportion of People on LD Register Invited Ref: Ref: First report of the joint NPHS/WCLD project group, January 2008

6. Annual health Checks Wales:Proportion of Invites Resulting in Health Checks Ref: Ref: First report of the joint NPHS/WCLD project group, January 2008

7. Annual health Checks – WalesFirst Report – Key Findings • Estimated 10,000 people aged  18 on LD registers in Wales in 2006/7 • Of those who received an invitation, around 1/3 (32%) actually received a health check. • 6450 were invited; 2910 health checks undertaken • Wide variation between LHBs in the • Rates of invitations issued • Health Check ‘take-up’ rate • Likelihood of receiving a health check was related strongly to where people lived Ref: First report of the joint NPHS/WCLD project group, January 2008

8. Michael Report • People with LD find it much harder than others to access assessment and treatment for general health problems that have nothing directly to do with their disability. • There is insufficient attention given to making reasonable adjustments to support the delivery of equal treatment, as required by the Disability Discrimination Act. • Health service staff, particularly those working in general healthcare, have very limited knowledge about LD • Partnership working and communication is poor in relation to services for adults with LD • between different agencies providing care, between services for different age groups, and across NHS primary, secondary and tertiary boundaries Ref: Ref: Sir Jonathan Michael Jul 2008

9. Michael Report • People with LD are not visible or identifiable to health services, hence the quality of care is impossible to assess. • Data and information on this sub-set of the population and their journeys through the general healthcare system are largely lacking • The health needs of people with LD do not appear to represent a priority for the NHS. • Training and education about LD provided to under- and postgraduate clinical staff, in primary care and in hospital services across the NHS is very limited. Ref: Ref: Sir Jonathan Michael Jul 2008

10. Michael Report • Comprehensive legislative and advisory framework to prevent discrimination. • A primary care service framework for managing the health of people with LD from Primary Care Contracting • Reform of the General Medical Services (GMS) contract so that GPs can earn points through the Quality and Outcome Framework by establishing a register of their patients over eighteen years old with a learning disability • A range of guidance including on health checks, health facilitation, health action planning, the role of community learning disabilities teams (CLDTs), and how to develop Disability Equality Schemes. Ref: Sir Jonathan Michael Jul 2008

11. Where are we going?

12. What will the health check be? • People with a learning disability who are on the local authority register will be invited to come to their GP surgery for a health check. • The check will include: • Physical health • Medication • Mental health • Transition reviews (where appropriate) • Epilepsy (where appropriate) • To be able to give the health check doctors, nurses and receptionists have to have training in LD. • Must include people with LD, their families and carers. Ref: http://www.mencap.org.uk

13. LD Quality Indicators Vision

14. Annual Health Check – Findings • 3 to 4 referrals per patient • Primary / community care • Practice nurse, chiropody, dentistry • CTPLD • Dysphagia screening, Video-fluoroscopy • Dietician, speech and Language, continence advisor • Health Education • Cervical smear, sexual health • Secondary Care • Gastroenterology, cardiology, haematology, neurology • Bone Mass Density Scan • Long-term antipsychotics, AEDs • Dementia screening • Downs

15. Annual Health Check – Issues • Ear / eye drops • Check technique • Check ALL staff taught • Dietary Needs • Check All staff know about specific: • Needs – pureed, chopped • Specific utensils • Likes / dislikes • Understand pt choice vs obsessions / compulsions • Compliance with meds • Blister packs • Rationale for more expensive Melt formulations • Issues with ear / eye drops

16. Annual Health Check – Issues • Establish review times: • Chiropody - 3 monthly • Dentist - 6 to 12 monthly • Audiology - as relevant • Optician - as relevant, minimum bi-annual • Monitoring • Blood tests • Sedation / Best Interest • May need District Nurse • Annual unless otherwise for QoF • AEDs / Mood stabilisers FBC, LFTS before anaesthetic • Epilepsy NOT seizure free • AED levels trough annual

17. Annual Health Check – Issues • Time • More able pts with LD take TWICE as long • Flexibility • Where pts are seen • Hospital protocols • Health Action Plans MUST be a “living document” • Funding • Clinical • Social • Direct Enhanced Scheme is voluntary • Does not currently apply to ALL service users • Buddy scheme • Commissioning implications

18. Educational Resources – Surrey Specific • Acute Hospital Pack • HAP Information pack • Feeling Poorly Pack • Screening • Cervical*, Breast*, Testicular* • Cardiovascular, diabetes, osteoporosis • Dysphagia • Dementia booklets** • Continence booklet • Pain • Disorder Specific Guides

19. Annual Health Checks Summary Points • People with LD have twice as many health problems as the general population • Beware Diagnostic Overshadowing • Communication: • Speak to the pt • Use pictures, gestures, and body language • Medical history • Obtain from pt as far as possible • Accompanying family member / carer / advocate • Excess morbidity: • Related to disabilities • Syndrome related • Secondary e.g. obesity, reflux disease • Accessible health promotion materials are scarce • Recall and audit

20. How are we getting there ?

21. LD DES Training • To fulfill the requirements of the DES • To provide Practices with an introduction to: • Why the emphasis on health care for people with LD • The Health Action Plan process overall • LD Services and Resources in Surrey • To provide training in how to: • Compile an accurate LD register • Conduct “Individualised Health Checks” • To educate staff in primary care about: • Challenges faced by and healthcare needs of people with LD • Adaptations necessary for success of annual checks

22. LD DES Training - Surrey • Two three hour sessions • First attended by Admin, Doctor and nurse • Second – doctor and nurse • Faculty • GPSi LD • CTPLD manager • Nurse Consultant LD • Psychologist • Downs register, Pain project • LD psychiatrist • PCT • Pt / Carer

23. LD DES Training - Surrey • Addresses • LD DES • Background, requirements • LD QoF and DES registers • Rationale for Annual Health Checks, Health Action Plans • Preparation for Annual health Check • GP, nurse, pt, family / carer, admin staff • Roles and Responsibilities • Support materials – educational, charts • Annual Health Check Pilot Findings • Time, referrals • Best Interest • Diagnostic Overshadowing • Case Studies

24. Bristol Bowel Chart

25. eLearning for Health (elfh) • A Department of Health Programme in partnership with the NHS and Professional Bodies providing high quality content free of charge for the training of the NHS workforce across the UK • In the process of delivering over 30 e-learning projects in partnership with medical Royal Colleges • Recommended as a key resource for teaching and learning critical appraisal skills in an independent review of critical appraisal resources to be published in Education for Primary Care • Access is granted via the e-LfH website and the respective Colleges Ref: http://www.e-lfh.org.uk/

26. eLearning for Health (elfh) • The e-GP website • Access to the e-GP online e-learning resource for NHS GPs & doctors undertaking specialty training for UK general practice • Jointly developed by the Royal College of General Practitioners (RCGP) and e-Learning for Healthcare (e-LfH). • It differs from other e-learning resources in that it is explicitly written by GPs for GPs • Provides a programme of e-learning modules covering the RCGP curriculum. • Each module made up of reflective and interactive e-learning sessions • Enhance GP training and support preparation for appraisal and revalidation • Launched at the Royal College of General Practitioners (RCGP) on July 2009

27. eLearning for Health (elfh)

28. eLearning for Health (elfh) Learning Disabilities - Module 14

29. Other Initiatives & Resources ?

30. British Inst of Learning Disabilities (BILD) • Provides a range of training that includes: • Communication • Intensive Interaction • Person centred approaches to better lives • Meeting the needs of people with PMLD • Literacy activities for people with PMLD • Understanding the Mental Capacity Act and its implications • Non-instructed advocacy • The emotional impact of self injurious behaviour • Understanding challenging behaviour Ref: http://www.bildservices.org.uk

31. Mencap – Training Resources • Learning Disability Awareness Workshops.  • For external organisations to: • Aid understanding of learning disabilities • Develop organisation to offer an improved service for their customers whoo have LD. • Easy Read Services • How to make information more accessible • Profound and Multiple Learning Disabilities (PMLD) • Accredited courses in B’ham. Manchester, Northampton Ref: http://www.mencap.org.uk

32. ImPaCT in Europe – Background • 10% of Europeans have disabilities (all types) • 37 million in the EU; 80 million in Greater Europe • Demographic change,  ageing population, is leading to: •  financial pressure on health and social care systems • people live longer, more likely to develop minor disabilities • Improved health care for people with LD •  longevity •  number people whose family unable to cont caring • Clear need for Person Centred Technology (PCT) to provide: • Enhanced services at a lower unit cost per person. • New types of social / health care service provision: • Telehealth, call centres, Assistive Technology for the promotion of health / safety at home / work Ref: http://www.impact-in-europe

33. ImPaCT in Europe – Project Outline • Objective: • To raise awareness of benefits of Person Centred Technology (PCT) for disabled people and their carers • Technology specifically designed around individual • Improving QoL; open up potential employment opportunities • Demonstrate how assistive technology and ICT can support independence • Launched by partnership of European organisations coordinated by EASPD • European Association of Service providers for Persons with Disabilities. • Funded under the Lifelong Learning Programme of DG Education and Culture Europe • Runs from January 2009 to December 2011 Ref: http://www.impact-in-europe

34. ImPaCT in Europe – Project Outline • Targets people with cognitive, intellectual and physical disabilities and their carers • Will develop an ethical code that is based upon a person centred approach. • Will carry out a training needs analysis and mapping exercise across countries within the EU, researching how and where PCT, including ICT, is used and to what extent • Information to be shared across diverse audience: • users, carers, policy makers, purchasers, providers and manufacturers • Dissemination through seminars and conferences in the partner countries. Ref: http://www.impact-in-europe

35. ImPaCT in Europe - Partners

36. ImPaCT in Europe - Contacts • EASPD • Miriana Giraldi, Project Coordinator • Miriana.Giraldi@easpd.eu • +32 2 282 46 11 • http://www.easpd.eu • UK: • Nottingham Community Housing Association and HFT • http://www.hft.org.uk

37. Thank you