MissingLynks
Will this inclusive language accompany language that is accessible for people with learning disabilities? Or will it, as has been my observation, replace it?
In 2019, NHS England reported:
The proportion [of women with learning disabilities] taking up the offer of cervical screening may be even lower in the South West. A study in Exeter has found that only one in four of women with learning disabilities attend their cervical screening appointment when invited.
www.england.nhs.uk/south/2019/01/23/study-shows-only-1-in-4-women-with-learning-disabilities-attend-cervical-screening-in-the-south-west/
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People with learning disabilities are well known to encounter barriers in accessing health screening, and this is a contributing factor to why they have an average life expectancy of 20 years less than the rest of the population.
www.gov.uk/government/publications/cancer-screening-and-people-with-learning-disabilities/cancer-screening-making-reasonable-adjustments
Evidence and research
People with learning disabilities have poorer health and are more likely to die at a younger age than people in the general population, in part because of poor access to health services. Evidence suggests they’re at a much higher risk of gastrointestinal cancer. It’s likely that the rates and pattern of cancer among people with learning disabilities is changing as they’re living longer.
It’s been well documented over some years that women with learning disabilities have a much lower participation rate in cervical and breast screening programmes than women in the general population. This has been more comprehensively documented by the Learning Disability Health and Care dataset collected by NHS Digital.
This dataset shows differing participation rates for the 3 national cancer screening programmes and for each, substantial variation around the country. In the most recent year for which we have figures (2015 to 2016), 75% of people with learning disabilities eligible for colorectal cancer screening had the test compared to 83% of eligible people without identified learning disabilities. Corresponding figures for breast cancer screening were 51% and 67% and for uterine cervical cancer screening 30% and 76%.
Barriers to uptake
Research shows that there are many practical barriers to various types of cancer screening.
These may include:
lack of routine use of easy-read invitations
difficulties using appointment systems
time pressures
mobility issues
communication difficulties
Women with learning disabilities are more likely to be stopped from taking part in cervical or breast screening programmes because if they’re stopped from taking part in a screening, a call and recall system will remove them from taking part in all screening programmes.
^Healthcare professionals and carers attitudes and knowledge of screenings
The attitudes and knowledge of both professionals and carers supporting people with learning disabilities play a part in the poor uptake of screening.^
Many screening professionals have had little experience of supporting people with learning disabilities and may lack the appropriate knowledge and skills. Equally, many support staff will not have had any training in cancer prevention. Evidence suggests family carers do not always consider screening to be a high priority and discussions about it can be difficult because it is considered to be a sensitive topic and may involve conversations about sexual activity.
There are also issues about the attitude and knowledge of people with learning disabilities themselves. They may not understand why screening is important and fear, anxiety and embarrassment may stop them going for screening.
A lot of accessible information and resources are available to help people with learning disabilities understand the need for screening, what it involves and how to be prepared for it. However, many staff are unaware of these resources and do not make use of them. Accessible information can raise awareness and therefore can be used to support informed consent. Research has shown that concerns about the capacity of people with learning disabilities to consent to participate in screening programmes can also be a barrier.
At this juncture, I must also point out that women with learning disabilities are sexually abused at sky-high rates, so we cannot assume they have not been exposed to HPV.