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This publication is available at https://www.gov.uk/government/publications/reasonable-adjustments-for-people-with-learning-disabilities/cancer-screening
1. 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%.
2. 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.
2.1 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.
3. Improving uptake through education
Research suggests people with learning disabilities, family carers, residential staff, GPs and radiographers who are provided with education, training and support in screening programmes can improve people with learning disabilities participation in these programmes
Increasing participation in cervical screening is particularly difficult because of the invasive nature of the procedure. However, there is evidence that collaboration Community Learning Disability Team nurses and the primary care staff responsible for screening can help to increase participation by women with learning disabilities.
4. Policy and guidance
4.1 Breast screening
The NHS Breast Screening Programme provides free breast screening every 3 years for all women aged 50 and over. Once women reach the upper age limit for routine invitations for breast screening, they are encouraged to make their appointment.
In 2011, the NHS Breast Screening Programme published good practice guidance on partial or incomplete screening mammography, updating the guidelines for radiographers. The procedure involves a small radiation dose, justified on the grounds of the benefits arising from the likelihood of identifying possible early, treatable tumours. Earlier guidelines had advised that in some women where physical disability prevented good positioning for the mammogram, the radiation dose was not justifiable since the quality of the images likely to result would not provide dependable screening results.
The new guidance acknowledged the importance of making every possible attempt to obtain effective satisfactory mammograms for disabled women whilst stressing the importance of not causing harm. It noted that i if only a partial view could be obtained as a result of physical limitations or withdrawal of consent during the procedure, this could still produce a partial result which could provide at least limited net benefit. On this benefit the radiation exposure involved was considered justifiable. This has enabled a larger number of disabled women to participate in the breast screening programme.
4.2 Cervical screening
The NHS Cervical Screening Programme invites all women aged from 25 to 64 for a free cervical screening test every 3 to 5 years. Cervical screening is offered at different intervals depending on age. The NHS call and recall system invites women who are registered with a GP at appropriate ages and intervals and keeps track of follow-up investigations.
In 2008, the human papillomavirus vaccination programme began. This offers protection against cervical cancer and is usually given to girls in year 8 at schools in England. Changes to the screening programme are not planned yet, partly because it will be some years before the cohort of immunised women reach the age for screening and partly because immunisation will not prevent all types of cervical cancer.
4.3 Bowel screening
The NHS Bowel Cancer Screening Programme offers to screen every two years to all men and women aged 60 to 74. All those eligible for screening receive an invitation letter explaining the programme and an information leaflet. About a week later, a faecal occult blood (FOB) test kit is sent out along with step-by-step instructions for completing the test at home and sending the samples to the hub laboratory. The test is then processed and the results sent within two weeks.
The NHS Bowel Cancer Screening Programme is currently piloting a new screening test. Men and women in six pilot areas will be invited for ‘bowel scope screening’ around the time of their 55th birthday. Bowel scope screening is an examination called ‘flexible sigmoidoscopy’ which looks inside the lower bowel. The aim is to find any small growths called ‘polyps’, which may develop into bowel cancer if left untreated. Bowel scope screening is an addition to the existing NHS Bowel Cancer Screening Programme.
Several UK policy documents emphasise that people with learning disabilities should have equal access to general and preventative health services.
- Under the Equality Act 2010, all public bodies are required to make reasonable adjustments to ensure that people with learning disabilities can use their services.
- NHS Cancer Screening Programme has published a series of documents relating to stopping people from taking part in programmes. These make reference to the need for accessible information for people with learning disabilities. They also stress the need for people to work on the Mental Capacity Act and to document any best interest decisions.
This set of guidance stresses that, as a rule, people with learning disabilities should continue to be invited to participate in screening programmes. Invitations can then be considered and accepted or declined on each occasion. It states unequivocally that having a learning disability is not in itself an acceptable reason for screening invitations to be withheld.
This guidance on equal access to breast and cervical screening state that :
- people with learning disabilities have the same rights of access to breast and cervical screening
- health or social services staff, supporters and people working in screening programmes should give advice on how to do a visual check without using a mammogram
- information should be provided to disabled women to help them make an informed choice about participation
- advice should be on what to do if a woman is not able to consent
- practical advice before and during cancer screening appointments
5. Consent and capacity
Mental Capacity Act sets out the law regarding capacity and consent and the Code of Practice provides guidance through the correct process in cases where there are concerns that an individual may not have the capacity to take an informed decision.
It is underpinned by 5 key principles that must be considered when assessing capacity:
- a person must be assumed to have capacity unless it’s been clearly established that they lack capacity regarding the particular decision under consideration then
- a person isn’t to be treated as unable to make a decision unless all practicable steps to help him/her to do so have been taken without success
- a person isn’t to be treated as unable to make a decision merely because he/she makes what is considered to be an unwise decision
- an act was done, or decision made, under the Mental Capacity Act for or on behalf of a person who lacks capacity must be done, or made, in his/her best interests
- before the act is done, or the decision is made, regard must be had to whether the purpose for which it’s needed can be as effectively achieved in a way that’s less restrictive of the person’s rights and freedom of action
All screening programmes require participants to give informed consent before testing. People with learning disabilities should be assumed to have the capacity to consent to have the test unless there are good reasons to think they lack the ability to make this decision at this time. Where an individual is considered not to have the capacity to consent, staff involved would need to decide if it’s in the individual’s best interests to be screened. Where the test is non-invasive and painless, such as bowel screening, the decision to proceed would depend on behavioural compliance, as screening is likely to be in the patient’s best interests.
The initial decision should be specific to providing the faecal smears for the bowel screening test. As this isn’t invasive, carers can make this decision. However, a positive test will usually lead to further investigation. If the person lacks the capacity to consent for this, a formal best interest decision will be required for which it will be necessary to consult with others who know the person well as well as a range of other professionals, carers and family members. This will be arranged by the specialist screening practitioners at the first hospital appointment.This possibility should not affect the decision to complete the initial screening test. but it’s appropriate to ensure that relatives are aware that the process is happening in case a subsequent decision is required.
In the breast screening programme, women need to stand and place their breasts in an uncomfortable position. For this programme, it may be more likely to be in the best interest of those individuals who are non-compliant to remain on the list so they can be invited for screening at a later date (recalled), enabling further health promotion work and support to be provided in the future.
The cervical screening test is more invasive, and a formal best interest process is likely to be required before deciding whether to leave an individual on the list so they can be recalled. Taking a woman off the list (ceasing her from the programme) because it was considered in her best interest should follow regional policy. Her GP would be expected to lead the process with support from specialist learning disability professionals.
It is essential that accessible information about the screening programme is provided to help people with learning disabilities make their own informed decision about participation if at all possible.
6. Cancer screening problems experienced by people with learning disabilities
The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) found that cancer was one of the most common underlying causes of death for people with learning disabilities. Although the frequency of which cancer was reported as an underlying cause of death (20%) was lower than that in the general population (30%), deaths from cancer occurred at a much younger age in people with learning disabilities, particularly for women. The cases reviewed showed that access to cancer screening services for people with learning disabilities was variable and the CIPOLD report highlighted engagement in the bowel screening programme as being especially problematic:
- some people with learning disabilities received an invitation and pack but did not participate in the bowel screening. It was reported that for some this was possible because they didn’t understand the importance of screening; for others, it was likely to be because they didn’t have the support they required to complete the process
- some paid staff did not return a sample as they believed that stool samples could not be collected from incontinence pads
- some paid staff in care homes found a resident was unable to participate in the bowel cancer screening programme due to his learning disabilities
- other employees reported they needed guidance on how to collect a sample from an individual who could not do this themselves
CIPOLD found that one of the main reasons for deaths being assessed as premature was delays or problems with diagnosis. Significantly, more people with learning disabilities experienced difficulties in the diagnosis and treatment of their illness than did the comparator group.
There was a range of issues to a diagnosis of cancer:
- some women with learning disabilities were denied access to cervical screening from their assumed lack of sexual activity
- a lack of the reasonable adjustments an individual might need to participate in the screening or other investigations as illustrated in the case study below
7. Further resources
7.1 Guidance and tools
- NHS breast screening programme
- Guidance about best interests decisions and capacity in relation to cervical screening
- Cancer awareness toolkit
7.2 Easy read resources
- Easy-read leaflets and videos about cancer screening
- Macmillan Cancer Support has a list of links to accessible resources about cancer including a section on screening specifically
- Examples of easy-read breast screening invitation and result letters are available along with
- A series of 21 easy-read cervical screening invitation letters and all possible results.The letters can be adapted for your local area
- A tool that can be used to create an easy-read invitation screening letters
7.3 Photo stories
7.4 Breast screening short films
Films can be an accessible way to explain the screening process. This a series of short films about breast screening and checking your breasts:
- What is breast screening?
- Breast Screening: Getting Ready for Your Appointment
- What happens at your hospital breast screening appointment?
- What happens at your mobile unit breast screening appointment?
- Other Things You Need to Know About Breast Screening
- How to check your breasts
- The Smear Test Film was designed and made by women who have learning disabilities to give women and their carers information about smear tests
- Five short films to explain the bowel scope screening process