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1. Increasing understanding
Easy to understand information is helpful in supporting communication and understanding.
- how the woman communicates – you may need to ask carers
- which word the woman uses for vagina so that you don’t get misunderstandings
- offering a pre-visit so the woman can feel safe while you explain the test
- using an alternative venue, if appropriate
- showing the speculum and sample brush to the patient – let her handle it and explain how they work, for example “You will feel the speculum being inserted”
- showing the woman the position she will need to be in when she has the test and encouraging her to get onto the couch to see what this feels like
- suggesting she practices the position at home so she feels more comfortable about it (this can be done with her clothes on in her bedroom where she feels relaxed and carers may need to support this)
- reassuring her that she can have somebody present during the test if she’d like
- offering a longer appointment and a first appointment if needed
- ways to help the woman feel relaxed, such as music
Remember the woman needs to:
- have an understanding of what will happen at the test
- be able to remember this information for as long as it takes to do the test
- be able to understand that by having the test it will help her to stay healthy
- be able to tell you by any communication means that she would like to try to have the test done
- have an understanding of the signs and symptoms of cervical cancer (see an easy guide to cervical screening)
2. Making a best interest decision
If the woman has not understood enough to make her own decision on cervical screening you need to make a best interest decision for her.
To make a best interest decision, you need to have a discussion with people who know her well. These would usually be her family and carers. Include the woman in your discussion as much as possible. Discussions do not have to be face to face. Opinions on what is in her best interest can be collected through telephone calls.
A best interest decision is based on your reasonable belief at that time.
- obtaining the opinion of an independent advocate if professionals, families and carers cannot or do not agree on what is in the woman’s best interest
- reviewing the woman’s past screening history
- her beliefs and wishes, which could influence a best interest decision for her
If the woman has previously attended screening, this implies she once felt it was important. This knowledge could influence you and others when making a best interest decision for her. When a woman cannot manage to have cervical screening, you must consider other ways of keeping her safe from cervical cancer.This can include educating the woman, her family and carers about the signs and symptoms of cervical cancer.
Every time a best interest decision is made that cervical screening is not appropriate, education should be given. This ensures all family and carers have up to date information.
3. Tips for administration and reception staff
Primary care administration and reception staff provide a crucial role in supporting people with a learning disability to access cervical screening.
3.1 Know your population
Ensure people with a learning disability are flagged on your computer system. The community learning disability team can help verify lists.
3.2 Know who is due to be invited for screening
Using the prior notification list provided by the screening service you can identify women about to be invited for cervical screening who have a learning disability and may need additional support.
3.3 Know your community learning disability link
Find out who your community learning disability team link person is for your practice. This person may be able to offer additional support for a woman with a learning disability invited for cervical screening.
3.4 Know the facts
All women over 25, whether they are sexually active or not, are entitled to cervical screening. It is then the woman’s decision if she takes up the invitation. This decision can only be made by the woman or through a best interest decision.
3.5 Know where to get more information
3.6 Know who else in your practice can give support
Find out who performs cervical screening within your practice and who you can go to if you have any questions.
3.7 Further ideas
A member of the practice team may want to contact the learning disabled patient or their carer before they receive their invitation letter, using the prior notification list, to ask if they require any support.
You could also consider:
- enclosing an easy read version if you send a third letter
- using a clock face to show time as well as writing in numbers the appointment information
- making sure a double appointment is booked to enable reasonable adjustments