Cervical screening uptake by women with learning disabilities in Shropshire. (Barton et al 2003)

1. Cervical screening uptake by women with learning disabilities in Shropshire. (Barton et al 2003) Rick Robson Health Advisor Valuing People Support Team Valuing People Support Team Rick Robson –Febuary 2005

2. Aims of the study • To find out why so many women with learning disabilities in Shropshire have been ceased from the CSP. • To explore the scope for providing services to encourage women with learning disabilities to take part in the CSP. • To examine the scope for re-introducing appropriate women back into the programme. Rick Robson –Febuary 2005

3. Outline of Presentation To raise the awareness of Primary care workers with to regard to the CSP • Examination of the issues for women with a learning disability when meeting Primary care. • Communication with women and their carers • Consent. • Clinical Governance. Valuing People Support Team Rick Robson –Febuary 2005

4. Valuing Peoplestates “To enable people with learning disability to access a health service designed around their individual needs with fast and convenient care delivery to a consistent high standard and with additional support when necessary.” (DoH 2001) Rick Robson –Febuary 2005

5. Valuing People Support Team Rick Robson –Febuary 2005

6. Background • A survey of the CSP in Shropshire found that in some areas only 3% of women with learning disabilities were accessing the service. (Robson 1998) • Information from the Shropshire’s County PCT Learning Disabilities service revealed that 75% of patients with learning difficulties on their database had been ceased from the CSP. Rick Robson –Febuary 2005

7. Identifying women eligible for the study • 504 women with a learning disability between 20 and 64 years old were identified. • A total of 354 women were eligible for the study: • 244 of whom had no reported cervical smears and had been ceased from the CSP, • 18 women had at least 1 smear but were now ceased from the CSP, • 92 women were not ceased from the CSP but had no reported smears. Rick Robson –Febuary 2005

8. Responses from GPs • 318 questionnaires were returned from GPs (90% of total sample). The breakdown of these replies is as follows: • 219 from GPs of women ceased from the CSP and with no reported smears. • 14 from GPs of women who had been ceased from the CSP but had had at least one cervical smear. • 85 from those GPs of women who were not ceased from the CSP but had had no reported cervical smears. Rick Robson –Febuary 2005

9. Reasons stated by GPs for why women are ceased from CSP Rick Robson –Febuary 2005

10. Reasons stated by GPs why women may not have attended Rick Robson –Febuary 2005

11. Results from the interviews • 45 (39%) of the women remembered having a discussion with their GP/nurse about the CSP, 67 (59%) of women had had no discussion and only 2 carers didn’t know whether their patient had a discussion with their GP or nurse about cervical screening. • Of the 45 women who had had discussions about cervical screening: • 25 (56%) felt they had been given appropriate information from their GP/nurse, • 12 (27%) had been advised they did not need a smear, • 4 (9%) felt they had not been given appropriate information , • 4 (9%) were not sure whether they had been given appropriate information. Rick Robson –Febuary 2005

12. Types of further information required about smears Rick Robson –Febuary 2005

13. Didn’t think that she has to be put through it because of the fact she will not ever have sex (carer) Talk to my carer about whether I need it done and maybe my mum (patient) If she could have the test done at home she may be happier in her own environment (carer) A book would have helped explaining what it is with pictures (patient) To know what it was about and what for (patient) Audio tape instead of pamphlet for visually impaired would give more detail (carer) Is it absolutely essential as she would need a general anaesthetic? (carer) Quotes from the study Rick Robson –Febuary 2005

14. How helpful is the National Pamphlet? - Patients comments • Nice book, helps you to see what a smear test is. • It showed me what I would have to have done. • Book tells you what it is, but you need someone to explain how it is done. • Liked the leaflet and thought it was helpful, but would like to see a video on the TV. • I’d like to see the things they use. Rick Robson –Febuary 2005

15. Discussion - 1 • Women with learning disabilities may be unaware of their own sexual health needs. • They may not be aware that they can insist on having a female doctor, may be ill prepared for medical examination and may need to be escorted by someone who understands and can explain the service. • Some women with learning disabilities may also have physical disabilities that make taking a smear difficult by an inexperienced smear taker. Rick Robson –Febuary 2005

16. Discussion - 2 • Women with learning disabilities are vulnerable to sexual abuse. • Estimates of the prevalence of sexual abuse in adults with learning disabilities vary between 8 and 58%. • Although a woman with learning disabilities may not currently be sexually active, a history of sexual abuse would be a risk factor for the development of cervical cancer. • The benefit of cervical screening for women who have experienced abuse needs to be balanced against the risk of the procedure being traumatic and leading to the recall of previous experiences. Rick Robson –Febuary 2005

17. Recommendations • To raise smear takers awareness of the needs of women with learning disabilities. • To distribute the Good Practice in Breast and Cervical Screening for Women with Learning Disabilities (2000) to all general practices and providers who undertake smears. • To ensure that the National Pamphlet is readily available in providers workplaces. • To develop information packages and ensure that women and carers have access to the information so that they can make their decision whether or not to have a smear test. Valuing People Support Team Rick Robson –Febuary 2005

18. Training win—win Valuing People Support Team Rick Robson –Febuary 2005

19. NHS Learning Disability Cancer Website • Have a website • Provides information you can print off the website • .learningdisabilitycancer Rick Robson –Febuary 2005

20. Service User involvement • Involvement of the patient-audio recordings • Advocacy services • Community LD Teams • Patient Advisory & Liaison services Valuing People Support Team Rick Robson –Febuary 2005

21. Assessment difficulties • Limited concept of good health. • Poor communications skills. • Client’s ability to comprehend written/verbal communication can be limited. • Clients will often present an atypical clinical picture. • Most of the carers have no formal qualifications, but do have an intimate knowledge of the client’s behaviour. Valuing People Support Team Rick Robson –Febuary 2005

22. Communication • Face to face • Use person’s name • Speak slowly • Consider using audio recordings • Check and check again • Consent • Consult with carers Valuing People Support Team Rick Robson –Febuary 2005

23. Consent Valuing People Support Team Rick Robson –Febuary 2005

24. A Holistic Approach: Health Social Cullen Report 1992 Rick Robson –Febuary 2005

25. Principles defined by Common Law 1. All adults are presumed to be competent 2. All capable adults have the right to refuse no matter what their reasoning 3. Treatment of a capable person without consent constitutes an assault 4. Consent can be withdrawn at any time Valuing People Support Team Rick Robson –Febuary 2005

26. Common Law Framework • If the patient has capacity they decide • If the patient lacks capacity the Doctor does what is in the best interest of the patient • In certain cases the Courts will rule that a treatment is Lawful Valuing People Support Team Rick Robson –Febuary 2005

27. Needs of women with a learning disability in a healthcare setting. Rick Robson –Febuary 2005

28. Improving Access Every Patient Must be An Ordinary Patient Get it right for people with a learning disability and you will get it right for everyone! Valuing People Support Team Rick Robson –Febuary 2005

29. Thank you.For further information Ricky Owen Rick Robson Telephone 01743 261 182 Email : rick.robson@shropshirepct.nhs.uk www.valuingpeople.gov.uk Valuing People Support Team Rick Robson –Febuary 2005