1. Informed consent in women with learning disabilities relating to cervical screening Cervical screening update Tuesday 27 th February 2007

2. “Learning Disability“ defined Significant impairment of intelligence and social functioning (i.e reduced ability to understand new or complex information/learn new skills) Onset before adulthood I Q below 70

3. Consent “Seeking consent is part of a respectful relationship with people with learning disabilities, and should usually be seen as a process not a one-off event” Department of health (2001)

4. General points on consent For a person’s consent to be valid, the person must be: Capable of taking that particular decision (‘competent’) Acting voluntarily (not under pressure or duress) Provided with enough information to enable them to make the decision

5. Assessing Capacity to Consent Any adult should be seen as capable until proved otherwise Judgement should not be made until all possible practical steps have been taken to improve capacity The person is entitled to give consent when they have previously refused Past experiences should not be used to assess if the person can or cannot consent

6. Assessing Capacity to Consent For a person to have capacity to make a decision, they must be able to: Understand and retain information about the procedure Use and weigh up this information in the decision-making process We have a duty to enhance capacity

7. Assessing Capacity to Consent Provide information in accessible format Work at the person’s own pace where possible Judgement should be objective A person may only be able to make a decision for part of the procedure

8. Lack of Capacity to Consent Assumptions should not be made because the person has a learning disability A decision would be made in the person’s ‘best interest’ This decision would be made in consultation with others Necessity

9. Important points to remember No-one can legally give consent on behalf of an adult Time and attitudes can bias a person’s ability to make a decision A person is entitled to withdraw consent at any time Keep clear records of all stages of the process

10. Current situation More people with a learning disability are now accessing mainstream health services Closure of long-stay hospitals Advances in medical technology People are living longer

11. Problems and barriers – Communication difficulties Difficulties with reporting symptoms (expressive skills) Difficulties with understanding information (receptive skills) Who gives the information? Format of information

12. More problems and barriers – Time constraints Preparation Length of appointment Introductory visit

13. More problems and barriers – Physical difficulties Physical procedures Appointment systems Waiting rooms Reliance on supporters for attendance

14. Attitudes of staff – Health professionals Assumptions of sexual inactivity Expectation of physical/emotional difficulties Problems about consent Difficulties in ensuring cooperation Lack of confidence in communicating with patient Clinically and cost ineffective

15. … Attitudes of staff – Carers: family and paid supporters Assumption of sexual inactivity Screening is low priority compared with other health issues Poor understanding of screening, diagnosis and treatment

16. Be Aware Disability Discrimination Act 1995 requires us to anticipate the needs of all disabled people and make reasonable adjustments This applies to both physical and mental impairment

17. Some solutions Community Learning Disability Team will offer support to colleagues Health Action Plans – all people with a learning disability should be offered their own plan.This should detail any support needed with screening

18. More solutions – before appointment Invitation letter – font size/ask about any specific requirements Flag patient notes about requirements PNL: crosscheck with QOF learning disability register and follow up letter with phone call Offer introductory appointment Consider relaxation

19. More solutions – Preparation for appointment Ensure woman has access to information to enable her to make her own decision Ensure woman knows what to expect! Arrange a time when clinic is not busy Allow time/space for women who may find waiting rooms difficult Does the carer understand screening process Discuss issues of consent with carer Offer domiciliary visit?

20. Even more solutions – During appointment Ask the woman if she wants supporter with her Allow time to explain/show speculum/let her handle it if she wishes Offer choice of position Be prepared for behavioural withdrawal of consent and/or some distress Be prepared to make another appointment Ensure that refusal is seen positively as her choice Non-compliance this time does not mean ceasing from the programme

21. Final points Women with a learning disability have the same right of access to cervical screening as other women Women with a learning disability are entitled to make their own decisions about cervical screening Women with a learning disability cannot be assumed to be sexually inactive The Community Learning Disability Teams offer support to health colleagues

22. Judith Barber Health Facilitator Community Learning Disability Team