healthcare for people with learning disability in primary care in england
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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. Overview. Where are we coming from? Where are we going? How are we getting there? Other Initiatives / Resources.

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healthcare for people with learning disability in primary care in england

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

  • Where are we coming from?
  • Where are we going?
  • How are we getting there?
  • Other Initiatives / Resources
where are we coming from
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
annual health checks wales
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
annual health checks wales proportion of people on ld register invited
Annual Health Checks Wales: Proportion of People on LD Register Invited

Ref: Ref: First report of the joint NPHS/WCLD project group, January 2008

annual health checks wales proportion of invites resulting in health checks
Annual health Checks Wales:Proportion of Invites Resulting in Health Checks

Ref: Ref: First report of the joint NPHS/WCLD project group, January 2008

annual health checks wales first report key findings
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

michael report
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

michael report1
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

michael report2
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

what will the health check be
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.


annual health check findings
Annual Health Check – Findings
  • 3 to 4 referrals per patient
  • Primary / community care
    • Practice nurse, chiropody, dentistry
    • 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
annual health check issues
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
annual health check issues1
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
annual health check issues2
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
educational resources surrey specific
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
annual health checks summary points
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
ld des training
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
ld des training surrey
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
ld des training surrey1
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
elearning for health elfh
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


elearning for health elfh1
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
british inst of learning disabilities bild
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


mencap training resources
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


impact in europe background
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

impact in europe project outline
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

impact in europe project outline1
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

impact in europe contacts
ImPaCT in Europe - Contacts
  • UK:
    • Nottingham Community Housing Association and HFT