Cervical Screening & Women with Learning Disabilities

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

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

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%)

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%)

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

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

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

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

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

References

Department of Health, (2001), Valuing People: A New Strategy for Learning Disability for the 21st 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

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

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/