Helping women with learning difficulties to access cervical smear tests

Helping women with learning difficulties to access cervical smear tests

M. Orrell (1), Z. Rogg (2), S. Adams (1), N. Mullin (3)

Bridges Centre, Widnes, Cheshire, UK (1); Castlefields Health Centre,

Runcorn, Cheshire, UK (2); Highfield Clinic, Widnes, Cheshire, UK (3)

Background: A survey of 103 women with a range of learning

disabilities (LD) in Widnes and Runcorn (an urban area in North West England)

found only 7 had had a cervical smear within the last 5 years. In 2000, the UK

Government Department of Health issued ‘Good practice in breast and cervical

screening for women with learning difficulties’. A project was set up using

this recent guidance, including a female General Practitioner (GP) and two

specialist nurses in LD.

Objectives: To discover why the uptake of cervical screening was so

low in that group of women. To increase access to cervical cytology by engaging

women with LD along with their carers and support workers.

Design and methods: The GP provided a list of women with LD in her

practice who were eligible of the National Cervical Cytology Screening Programme,

aged between 20 and 64 years. The three professionals decided who should make

contact with each woman, either face to face, by telephone or letter according

to the woman’s needs. A person centred approach was used with consideration of

cognitive abilities. Desensitisation was provided using videos, pictures, the

gynaecological manikin and smear taking equipment.

Results: We identified 25 women with LD, 23 had never had a smear

while 2 women had had a cervical smear in the past. These 2 women attended for a

cervical smear after a reminder. The professionals and carers together decided

that a cervical smear would be too traumatic for 8 women. Despite intensive

efforts, and desensitisation for 6 women, no-one else had a smear. It was

discovered that usually the GP had made the decision regarding the ability of

the woman to cope with a smear and, in some cases, the carer’s were making the

decision for the woman without fully understanding the need for informed


Conclusions: The project led to multi-disciplinary decision making

with each individual, allowing full consideration of all the issues. However,

desensitisation and obtaining informed consent was time consuming. Recalling

past experiences of gynaecological examinations or possible sexual abuse meant

some women were reluctant to even discuss the possibility of having a smear.

Some carer’s saw the procedure as very frightening and possibly harmful to

their clients. A clinical pathway is being developed which local GPs are being

encouraged to follow to increase access to cervical smears by women with LD.

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