1. Cervical Screening & Women with Learning Disabilities

2. What is a Learning Disability? All of the following criteria are used to assess whether a person has a learning disability: A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence with an IQ below 70) with; A reduced ability to cope independently (impaired social functioning) and; Which started before adulthood, with a lasting effect on development

3. Prevalence 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 Evidence suggests a rise in the number of people with severe learning disabilities - 1% over the next 15 years

4. The Health Needs of People with Learning Disabilities 3 times more likely to die of respiratory disease than general population (46-52% v 15-17%) Higher rates of gastrointestinal cancer than general population (48-58.5% v 25% of cancer deaths) Higher prevalence of dementia than general population (21.6% v 5.7% of people aged 65+) Prevalence of schizophrenia is 3 times greater than general population (3% v 1%) Higher risk of coronary heart disease (14-20%)

5. The Health Needs of People With Learning Disabilities More likely to be obese or under weight than general population therefore more at risk of health problems 80% of people engage in levels of activity below the recommendations of the DoH Higher incidence of physical & sensory disabilities Less likely to engage in breast screening Less likely to undergo cervical smear test than the general population (24 v 82%)

6. Barriers to Accessing Screening Communication Low expectation Not able to read letters & leaflets Attitudes & assumptions Fear of health professionals Poor understanding Fear & anxiety about procedure Lack of time at appointments Physical environment Lack of accessible information Lack of preparatory work

7. Cervical Screening & Women with Learning Disabilities Women with learning and/or physical disabilities have the same right of access to cervical screening Don’t make assumptions about sexual activity, no one can be certain about the sexual history of some women with learning disabilities The following reasons cannot be used to cease women from the cervical screening programme: -Learning and/or physical disabilities -Assumptions about sexual history

8. Good Practice Identify your patients with learning disabilities due for screening Send out accessible letters & leaflets Discuss specific needs with woman & carers Preparatory work with woman about cervical screening Referral to Learning Disability Teams for additional work & support if needed Preliminary visits Reasonable adjustments e.g. longer appointments Follow Mental Capacity Act to gain consent

9. Consent The Mental Capacity Act (2005)  5 Key Principles: 1.Every adult has the right to make their own decisions & must be assumed capable of doing so until proved otherwise 2.Everyone should be given all the support they need to make their own decisions before conclusions are made that they cannot

10. Consent 3.People should be able to make unwise or eccentric decisions - it is capacity to make decisions, not decisions themselves, that is the issue 4.Any decisions or anything done for or on behalf of a person who lacks capacity must be made or done in their best interests 5.Anything done for or on behalf of people without capacity should restrict their rights & freedoms as little as possible

11. References Department of Health, (2001), Valuing People: A New Strategy for Learning Disability for the 21 st Century, London, DoH Department of Health, (2002), Improvement Expansion and Reform - Ensuring that ‘All’ Means All, London, DoH NHS Executive, (1999), Once a day: One or more people with learning disabilities are likely to be in contact with your primary healthcare team How can you help them?, London, NHS Executive NHS Cancer Screening Programmes, (2006), Equal access to breast & cervical screening for disabled women, NHS Cancer Screening Series No 2, Sheffield, NHS Cancer Screening programmes

12. Other Useful Information & Links 'Making decisions: A guide for people who work in health & social care’ www.dca.gov.uk/legalpolicy/mentalcapacity/publications.htm The Mental Capacity Act 2005: 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 Corbett, J., (2007), Healthcare provision & people with learning disabilities: A guide for health professionals, Chichester, Wiley Useful websites with lots of info about learning disability: www.valuingpeople.gov.uk www.intellectualdisability.info www.learningdisabilities.org.uk/ www.mencap.org.uk www.library.nhs.uk/learningdisabilities/