Abstract
People with a learning disability (LD) or intellectual disability (ID) may be just as likely to be sexually active as their peers, but are less likely to receive appropriate sexual health education. Unfortunately, this is one of the factors contributing to the higher risk of sexually transmitted infections (STIs), pregnancy and sexual abuse amongst people with an LD/ID. A GP can help to advocate for and support patients with an LD/ID to make informed and safe decisions related to their sexuality. This article, based upon a clinical case scenario, highlights the sexual health education needs of people with an LD/ID, as well as issues around STIs, contraception and safeguarding.
Clinical case scenario
30-year-old Alex, who has trisomy 21, attends your GP surgery because she is concerned about a malodorous vaginal discharge.
She has also informed you that she has recently started having sexual intercourse with her boyfriend for the first time. This has become increasingly painful. They have not been using any contraception.
Background
The definition of sexual health is broad, and has been defined by the World Health Organization (WHO) as ‘the state of physical, emotional, mental and social wellbeing in relation to sexuality and requires a positive and respectful approach to sexuality and sexual relationship’ (WHO, 2006). This definition places emphasis upon the wellbeing of the individual and sexual health as a human right.
Approximately 1 300 000 people in the United Kingdom have a learning or intellectual disability (LD/ID) (Public Health England, 2023). People with an LD/ID have the same sexual needs and rights as people without disabilities (Saul et al., 2022). They are just as likely to be sexually active as peers without disability, but those with a mild to moderate LD/ID are more likely to experience sexual abuse or exploitation, have a higher risk of sexually transmitted infections (STIs), and are less likely to use contraception. They are also less likely to receive sexual health education, perhaps due to societal stigma, concern of carers, and possible infantilising attitudes towards people with an LD/ID (Brown et al., 2020; de Wit et al., 2022). There can also be issues with understanding when the education is not appropriately translated (Finlay et al., 2015). Although concerns about vulnerability can be valid, there is a balance between risks and individual rights (McCarthy et al., 2022).
For a person with an LD/ID, sexual health may be the primary reason for a general practice consultation (such as concern regarding a STI), may be associated with the presenting complaint (like abdominal pain), or may occur as an opportunistic discussion as part of an unrelated presentation. Sexual health discussions may also occur at annual health checks, and routine cervical smears in female patients, representing important opportunities to discuss STIs, contraception, and planning for fertility. GPs are accomplished in providing person-centred care, and the enduring relationships with patients may provide an opportunity to coordinate equitable care, provide education, and encourage safe and individualised appropriate self-care (Starfield et al., 2005).
Sexual health education
Education gaps
Sexual health education has been demonstrated to be associated with safer sexual practice (Goesling et al., 2014). In contrast, a lack of knowledge, coupled with the language difficulties, communication problems, and potentially lower self-esteem of people with LD/ID, can increase unsafe sexual practice.
Teachers, social care workers, family members and health professionals often lack confidence in addressing sexual health issues, especially in people with an LD/ID (de Wit et al., 2022; Mastebroek et al., 2016). When information is discussed, it has often been shown to be far too complex, particularly for those with language difficulties (Finlay et al., 2015). Moreover, people with an LD/ID are also less likely to discuss sexual health issues (McCann et al., 2019). This can lead to them not receiving sexual health education and may lead to misconceptions and negative messages about sexuality being conveyed to people with an LD/ID (Matin et al., 2021). Even when people with an LD/ID are engaged in sexual health education their knowledge is often less than peers without an LD/ID and they may need the information repeated, or presented in a more appropriate format, when it is more applicable (Finlay et al., 2015; McCann et al., 2019). In general studies have shown that in people with an LD/ID body parts and physical characteristics are best understood, whereas knowledge about the risk of STIs and contraception are least understood.
The role of healthcare professionals
Teachable moments may arise in all healthcare settings, and it is important that all healthcare professionals are able to engage in discussions about sexual health. Annual health checks and the rapport that GPs have with people with an LD/ID may mean that these opportunities will frequently arise in primary care. Discussions about sex (Fig. 1) should be encouraged and approached in an open and non-judgemental way.

Infographic detailing the approach to talking to people with LD/ID about sex.
When opportunities for discussion and sexual health education arise, the patient’s previous knowledge should be ascertained. It can help to use clear and concrete knowledge, and basic concepts (such as intercourse) should be defined. Information should be provided in manageable chunks and may need to be repeated over subsequent healthcare encounters. Issues directly related to safety and protection should be addressed; for example, the right to decline sexual contact, condom use, and contraception.
People with an LD/ID should be supported to make informed choices and can be signposted to advocacy and information resources, such as the Supported Loving Toolkit from Choice Support and resources from Mencap (Choice Support, 2023; Mencap, 2023).
Assessment and management of STIs
Risk of an STI
People with anLD/ID have been found to have poorer knowledge of STIs overall, which could possibly predispose individuals to carry out riskier sexual practices and be at higher risk of acquiring an STI. Although individuals may not be able to relate their sexual activity to the health problems with which they present, it is imperative that clinicians do not avoid the topic of sexual health and further exacerbate the issue of diagnostic overshadowing (General Medical Council (GMC), 2023) (a complication of healthcare which is common in individuals with an LD or mental health issue, whereby their physical symptoms are correlated with their known mental health concern).
Although individuals with an LD/ID may be at higher risk of a STI, there is evidence to suggest that there is minimal difference in the prevalence of both number of tests and positive tests for STIs between those with and without an LD/ID. The main difference between both tested groups is that those with an LD/ID are much more likely to be tested for a STI at a slightly older age than those without an LD/ID, which could be due to increased supervision and social circumstances. Therefore, it remains the case that no matter the age of the patient, healthcare professionals should not disregard the risk of a STI based upon age, presence of an LD/ID or other harmful assumption.
The consultation
Broaching the subject of sexual health, STIs, and their treatment, can often be difficult in the context of a 10 minute consultation, particularly where there are care givers or family members present who may have their own agenda towards the sexual health of the individual for whom they care. This can be overcome by ensuring that the person with an ID is given some time privately with their healthcare professional before their care giver is invited back into the consultation.
Assessment of STI
Clear communication is crucial when addressing health concerns in someone with an ID and this can be encouraged by using both visual aids and avoiding medical jargon. A useful resource to use during consultations is from Unity Sexual Health services, which is an easy to read document that can be used to help the patient determine their own risk factors and describe some of the symptoms relating to STIs (Unity Sexual Health, 2023).
When it comes to testing patients for a STI, as well as in-person testing, there are self-testing kits available which may be more suitable for the individual. These home testing kits have their own disadvantages, since the instructions are often not clear enough and the tests require a certain level of manual dexterity (Middleton et al., 2021).
Identifying and facilitating capacity in people with an ID is a core component of examining and testing for STIs. Patients with an ID should not be assumed to lack capacity to consent for medical examinations and tests, but where capacity is lacking, or the patient has an official decision maker, then the risks and benefits of the test and examination should be carefully weighed up, and the procedure should be in the patient’s best interests (Chave-Cox, 2014). Capacity is decision-specific and time-specific (GMC, 2020) and where there are concerns over the patient’s capacity to consent for an intimate examination, it may be appropriate to reschedule a further appointment at a later date or give information in the appropriate way for the patient to consider further.
There is currently no set standard or guideline published to assist healthcare professionals managing patients who require an intimate examination, but allowing adequate time, emotional support and using deep breathing exercises may alleviate some of the associated stress.
Contraception
Reproductive choice
Prior to the Mental Capacity Act (MCA) of 2005, there were a much larger number of cases in which people with an ID were referred and recommended for forced sterilisation as a contraceptive measure. Much of this was fuelled by the early 20th-century eugenics movement, whereby LD/ID was thought to be hereditary and, therefore, encouraged not to be passed onto offspring. Fortunately, statute law was never passed in the UK, which protected the already restricted rights possessed by people with an ID. It should, however, be noted that people with an ID are still being manipulated into undergoing sterilisation procedures, which often contributes to their eligibility criteria to enter certain group homes (Matin et al., 2021).
Despite the protection of the MCA 2005 there remain a number of misconceptions within healthcare that have led to an inequitable reproductive environment for people with an ID. There is often an incorrect assumption that people are not sexually active ,and therefore, do not require the same provisions in terms of contraceptive options, having cervical smears or requiring mammograms (Silvers et al., 2016). Although there is evidence to suggest that people with an ID are less sexually active overall, in those who are sexually active, there is a higher rate of pregnancy and unwanted pregnancy. This has been theorised to be due to several factors, including poor sexual education and a lack of reproductive and family planning support due to an ongoing culture of control over the reproductive rights of those with an LD/ID (Horner-Johnson et al., 2020). This only strengthens the position of GPs to act as an advocate for reproductive choice, as this conversation can be brought up both routinely at annual health checks or cervical smears, and opportunistically at emergency appointments.
Patients with an LD/ID may also require specific genetic counselling (depending on the genetic basis for the LD/ID), folic acid, and medication modification, to minimise foetal and pregnancy risks. Another effect of poor contraceptive counselling and reproductive choice is that women with an LD/ID are more likely to have a rapid repeat pregnancy within 12 months of giving birth, 7.6% of LD/ID patients as opposed to 3.9% of those without an LD/ID, which in 49.1% of patients with an LD/ID would end in a termination of pregnancy (Brown et al., 2018). As well as this having adverse effects on both the physical and mental health of the patient, it represents a missed opportunity for that individual to be educated and supported at all stages of family planning.
Contraceptive options
The need for contraception may be related to sexual activity, menstruation purposes or other hormonally linked medical problems. In women with an ID there is a distinct difference in the type of contraception that they are taking, with contraceptive implants being most popular and the progesterone-only pill least popular (Public Health England, n.d.) ).
As with any patient requesting or requiring contraception, there are a number of different factors that may prove more desirable or impermissible, and it is worth framing the consultation around these factors – some of which are described in Box 1.
The most efficacious contraceptives include long-acting reversible contraception and sterilisation, whilst the least efficacious include barrier methods, such as condoms and diaphragms, and natural awareness. Figure 2 details the efficacy of individual contraceptive methods
Side effects depend on the action of the contraception. Some side effects may be beneficial, such as reduction or cessation of menstruation, and form part of the reason why people request certain contraceptive methods (Greenwood and Wilkinson, 2013). Other considerations include whether there are associated hormonal side effects, changes to bleeding patterns and the route in which the contraceptive is administered
People with an ID often have other coinciding health conditions, which may restrict the type of contraception that they can be offered. In general there are higher rates of co-existing medical conditions including epilepsy, diabetes and asthma (Liaoi et al., 2021), which may restrict the options for contraception due to concurrent medication use. The UKMEC guidelines have defined the risk-benefit for each contraceptive method based upon medical, gynaecological, surgical and social factors (FSRH, 2019) Infographic detailing contraceptive options.
Although National Institute for Health and Care Excellence (NICE) guidelines state that all contraceptive methods be discussed (NICE, 2019), for people with an ID being exposed to too much information may cause increased anxiety, particularly where this is provided as written information (Middleton et al., 2021). Resources such as the ‘Brook’ website and ‘The Lowdown’ could therefore help guide patients and their caregivers through different contraceptive options (Brook, 2023; The Lowdown, 2023). There are also a number of easy read resources about different contraceptive options and STI leaflets available on ‘Sexual Health D&G’ (Sexual Health D&G, 2023). Furthermore, people with an LD/ID may not be aware that they can access contraception and sexual health services from community sexual health clinics and may benefit from specific signposting to these services. People with an LD/ID can be reassured that it is recommended that all sexual health clinics have policies in place to address the needs of people with an LD/ID (Brook et al., 2019).
LGBTQ+ community with an LD/ID
Stigma
In people with an LD/ID who are LGBTQ+ there is evidence to suggest that they suffer from a ‘layering’ effect, whereby they suffer discrimination both due to their LD/ID and their sexual preference. This double discrimination effect has also been used to explain why people with an LD/ID find it even more difficult to open up about their sexuality (Stoffelen et al., 2018). According to the British Association for Sexual Health and HIV, exploring sexuality during a consultation is key in undertaking a thorough sexual health history and in identifying and assessing the risk of an STI (Brook et al., 2020). However, there is no current guidance on how this is best approached for people with an LD.
People with an LD/ID who are LGBTQ+ often describe not being supported by their caregivers and lacking access to role models, which has been shown to have negative effects on their identity (Stoffelen et al., 2018). This study suggested that a lack of social contact with other people who have an LD/ID and identify as LGBTQ+ can have adverse negative effects, whilst there is also evidence to suggest that some LD/ID people will hide their identity to support staff to prevent these adverse negative effects (Mencap, 2023).
To avoid stigmatisation and provide people who are LGBTQ+ with an LD/ID the support that they need to meet similar people, there are groups up and down the country, both online and in person, called ‘Better Connected’ and run by the charity Guideposts (Better Connected, 2023). GPs could recommend these for the benefit of both patients and caregivers.
Contraceptive health for LGBTQ+
The Faculty of Sexual and Reproductive Healthcare (FSRH) has produced clear guidance on contraceptive counselling for people who identify as transgender or non-binary due to the differences in acceptability of certain methods of contraception (FSRH, 2017). With respect to national screening programmes, such as the cervical smear programme, the FSRH has advised that all individuals with a uterus should be invited to cervical screening programmes in which sampling should be done sensitively. There is no specific guidance with respect to people who are LGBTQ+ with an LD/ID, however it is concerning to learn that conversely to the guidance, some people with an LD/ID were not invited to cervical screening and mammography appointments, due to fear over the suitability of these (Alborz et al., 2005).
Safeguarding
Capacity to engage in sexual behaviours
It is important to remember that an LD/ID does not equate to a lack of capacity to consent to sexual relationships. Capacity can even be gained through appropriate and individualised sexual health education (Choice Support, 2023).
Each decision should be assessed separately, and people should be provided with the information they need to be informed in their choices. There may, however, be cases where the person wants to be involved in a sexual relationship, but does lack capacity. In these complex cases, it is advisable to refer to the Court of Protection (Choice Support, 2023; Herbert et al., 2019).
Risk of maltreatment and abuse
People with an LD/ID experience the highest rates of domestic abuse and are up to four times more likely to experience sexual violence than those without an LD/ID (Office for National Statistics, 2021). This may occur in the social care, education, or home setting. It can occur due to a lack of power in relationships, low self-esteem, lack of understanding about sex, and vulnerability to coercion and manipulation (Matin et al., 2021). They may not understand the abuse, may feel guilty, ashamed, or that it is their fault and, as such, considerate communication should be used to reassure the person that they have done the right thing in speaking out (Choice Support, 2023).
Warning signs of abuse may be identified within the consultation, and the relationship and rapport that exists between the practitioner and patient may encourage the first disclosure of abuse. Suspicions should be acted upon and local safeguarding teams, or the police, involved as appropriate (Choice Support, 2023).
Harmful sexual behaviours
In a small minority of people with an LD/ID, harmful or abusive sexual behaviours may be displayed because of lack of awareness and understanding of appropriate sexual health and boundaries. In the social care setting, these behaviours may be directed towards staff or other people in social care, while in the community these can be directed towards children and other vulnerable people (Choice Support, 2023). As such the immediate network and risks to others should be considered. The reasons behind the development of these behaviours should also be given attention, as they may be an indicator of the person with the LD/ID being subject to abuse themselves.
Resources such as the Brook Traffic Light Tool or the NSPCC Harmful Sexual Behaviours Framework can help to guide assessment and decision making around potentially harmful sexual behaviours (Brook, 2023). Help and guidance should be sought in cases of concern.
Clinical case scenario (continued)
After further discussion, exploring Alex’s understanding and knowledge of her sexual health, and her circumstances, you discover that her boyfriend John also has trisomy 21, is of a similar age and from the same supported living facility. Alex had informed the support staff of the relationship and her physical symptoms, and this prompted the GP consultation.
You arrange for Alex to undergo screening and treatment for STIs. You also signpost her to resources from Choice Support and Mencap and arrange a subsequent consultation to discuss contraception options.
Key points
Even though someone has an LD/ID, it does not necessarily mean that they lack the capacity to consent to sexual relationships Teachable moments to discuss sexual health may arise during the primary care consultation and should be encouraged People with an LD/ID are at higher risk of a STI, pregnancy and being the victim of abuse In a small minority of people with an LD/ID, harmful or abusive sexual behaviours may be displayed because of lack of awareness and understanding of appropriate sexual health and boundaries There are multiple resources available to guide empowered decision making around sexual health, reproductive choice and healthy relationships for people with an LD/ID
