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.