For people with a mental health diagnosis and/or learning disability
In both mixed-sex and same-sex residential settings there is the possibility of individuals entering sexual relationships with other patients. Sexual relationships, and the expression of sexuality form part of the life course for most individuals and these needs and rights are the same for people with a mental health diagnosis and/or learning disability (LD) as they are for those without (Grant, 2010). At the same time, people with a mental illness or LD can be at risk of abuse or exploitation. Issues around consent, empowerment and privacy need to be considered as well as the relevant legal frameworks (Mandelstam, 2013).
The case study vignette for this assignment is available in Appendix I. To protect their anonymity in accordance with the Data Protection Act 1998 and the Health and Care Professions Council Standards of Proficiency 7.1 (HCPC, 2017), I will refer to those involved as ‘L’ and ‘P’, and our service as ‘Unit X.’ This assignment will focus on how a balance was struck between considering ‘L’ and ‘P’s rights to a sexual relationship and protecting them from exploitation and abuse. I will consider how societal and familial attitudes contributed to ‘L’ and ‘P’s lack of knowledge about relationships and sex. I will explore the legal frameworks and policy guidance that both dictated and guided our intervention in their relationship as well as case law and its relevance in this case. I will discuss the ethical dilemmas raised by the conflicting views of ‘L’, ‘P’ and their families and the ethical principles that were considered during decision-making, and refer to the Professional Capabilities Framework (PCF) and HCPC standards throughout, as they relate to my intervention.
Attitudinal and educational barriers
Evidence shows that sex involving adults with disabilities is perceived more negatively than sex between non-disabled adults, and their sexual behaviour is considered more problematic than that of adults without disabilities (Rogers, 2009, Neufeld et al 2002, Knowles, 2017). Compounding this, research has shown that the views of service users with LD are often in conflict with their families’ views when it comes to sex. For example, Berman’s 1999 study as well as the survey undertaken by CHANGE (2010) showed that most adults with LD want to get married and have fulfilling sex lives but conversely, Evans’s 2009 found that parents often supervise their learning-disabled adult children closely to prevent them from forming sexual relationships. This might suggest that the protests of ‘L’ and ‘P’s families against their relationship may have stemmed partly from their infantilization of these two individuals (Berman, 1999, Wright, 2011, Harflett and Turner, 2016).
Evidence also shows that adolescents with LD experience discrimination by being offered limited sex education which can contribute to their desexualisation even after reaching sexual maturity (Garbutt, 2008, Lafferty et al, 2006, Sinclair et al, 2015, Fitzgerald and Withers, 2011). I considered whether this lack of sex education predisposed ‘L’ and ‘P’ to the need for mental capacity assessments for consent to sex, with a fairly predictable outcome (PCF:3.2, 6.1, 6.2, HCPC:5.1, 6.2).
Legal Mandate: Mental Capacity Act 2005
Neither ‘L’ nor ‘P’ was detained under the Mental Health Act 1983 therefore the most relevant legislation in their case was the Mental Capacity Act (MCA) 2005. This is the starting point of the law in relation to capacity to consent to sexual relations. The MCA, in force since 2007 in England and Wales, has the primary purpose of promoting and safeguarding decision-making within a legal framework for those incapable of making certain decisions for themselves. It starts from the assumption that all individuals have the capacity to consent (Section 1).
Capacity is a legal test within the MCA and is tailored to a specific decision;It includes a two-stage test of an individual’s capacity: 1) Does the person have an impairment of their mind or brain, whether because of an illness or external factors such as alcohol or drug use? 2) Does the impairment mean the person is unable to make a specific decision when they need to? (REF MCA). The presence of a mental disorder in both ‘L’ and ‘P’, therefore, did not necessarily mean that they lacked the capacity to consent to sex. Indeed, had concerns about their understanding of sex not arisen, intervention would have been unnecessary. Once concerns arose, however, further assessment of their capacity (both to consent to sex and to understand the consequences of unsafe sex) was necessary to ensure that neither one was at risk because of their own behaviour or the behaviour of the other (PCF:5.3, HCPC:2.3).
We knew that any intervention had to be guided by the underpinning principles of Section 1 of the MCA: 1. Presume their capacity unless it is proven otherwise. 2. ‘L’ and ‘P’ should be given all practicable help to make a decision before being deemed to lack capacity. Even if lack of capacity was established, they should still be involved as much as possible in decisions about their care. 3. They have the right to make unwise or eccentric decisions and this alone does not imply lack of capacity. 4. Anything that was done on their behalf if they lacked capacity had to be done in their best interests 5. The least restrictive option had to be used if we did intervene, and their rights and freedoms had to be considered (SCIE, 2016) (PCF:5.2, HCPC:2.1).
Initial capacity assessments showed that both ‘L’ and ‘P’ were indeed lacking in capacity to consent to sex. The MCA instructs that all practicable steps be taken before someone is deemed unable to decide for themselves, including providing information in an accessible format. Evidence shows that with support and accessible sex education, adults with LD can engage in safe, healthy and happy sexual relationships (Sinclair et al. 2015; Sherri, 2015), therefore I was asked to provide ‘L’ with sex education to help her gain capacity in this area (PCF:7.2, 4.1, 4.2, HCPC:2.1, 2.3).
Research shows that capacity to understand the nature of sexual relationships can be enhanced by information and education and this is most effective if undertaken on a regular basis (Murphy and O’Callaghan 2004, Dukes and McGuire, 2009),
I suggested to staff that ongoing, regular and accessible sex education should be offered in a safe place where she felt comfortable (Elderton and Jones, 2011, FPA, 2014, Kelly et al, 2009) to maximise her chances of gaining capacity in the future (PCF:7.10, 7.4, 2.1, 2.4, 2.5).
Another worker undertook sex education with ‘P’, using the easy-read booklet that I had created for ‘L’ which had been adapted to suit ‘P’s communication style. After several weeks another capacity assessment was undertaken and ‘P’ was determined to now have the capacity to consent to sex and to understand the risks involved with unprotected sex.
Despite being the starting point of the courts in assessing capacity, the MCA can also open the door to oppression if used incorrectly. Bishop (2012) points out that the MCA is sometimes used to support risk-averse practice. In the case of ‘L’ and ‘P’, I was aware that staff attitudes towards their relationship – stemming from uncertainty around the law and their responsibilities – could lead to negative presumptions about the level of ‘L’ and ‘P’s capacity and therefore risk-averse practice could occur (PCF:3.2, 3.3, HCPC:6.2). We took care to ensure that the MCA was applied in the least restrictive way and that ‘L’ and ‘P’ were empowered to be decision-makers in this matter, in line with anti-discriminatory social work principles (PCF:2.1, 2.4, HCPC:6.2).
Legal Mandate: Human Rights Act 1998/ECHR
The Human Rights Act 1998 sets out the fundamental rights and freedoms that we in the UK are entitled to. It incorporates the rights set out in the European Convention on Human Rights (ECHR) into domestic British law and came into force in the UK in October 2000 (Curtice & Crocombe, 2011). This includes the right to respect for private and family life (Article 8) and the right not to be discriminated against in the enjoyment of your rights (Article 14). This, along with the Equality Act (2010) meant that ‘L’ and ‘P’ were protected from discrimination based on their disability in their pursuit of fulfilling relationships (PCF:4.2, 4.3). Previous case law highlights the accountability of public service providers such as ours to act in a timely manner in the protection of these rights, such as the 2014 case of CH v A Metropolitan Council. CH, an adult married male with Down’s Syndrome, was not provided with sex education in an acceptable timeframe after being deemed to be lacking in capacity to engage in sexual intercourse with his wife. This delay meant that under the Human Rights Act 1998 (HRA), his right to private and family life under Article 8 of the ECHR had been breached due to the delay in the provision of this sex education (REF case law). In the case of ‘L’ and ‘P’, therefore, it was important that the sex education began promptly after ‘L’s lack of capacity was established, to protect their human rights under Article 8 (PCF:4.2, 4.3, 8.2, 8.3). This was also in line with organisational policy which stated that sex education should be provided to residents once it was established that they were having a relationship (PCF:8.3).
It was evident however that organisational policies clashed with ‘L’ and ‘P’s rights under Article 8 of the HRA in the initial stages of their relationship. A lack of private places for them to meet was identified. Organisational policy that disallowed residents from entering each other’s bedrooms and the fact that bedroom doors did not lock from the inside made privacy difficult and led to ‘P’ feeling discriminated against. In addition, the amount of control that staff had over residents’ time during the day did not allow for the creation of spontaneous physical contact (HCPC:6.2).
There was also staff reluctance to support their relationship due to uncertainty about their responsibilities under the law. This lack of legal knowledge and clear organisational policies around relationships and sex is evidenced in a significant amount of mental health literature (Grodin, 2013; FPA, 2014; Shakespeare, 2017). I would argue that all care staff should be trained specifically on the HRA and Unit X should consider how their policies can be adapted to promote anti-discriminatory practice towards those with capacity in relationships (PCF:8.2, 8.4, 8.5, 9.2, HCPC:6.1, 6.2).
UN Convention on the Rights of Persons with Disabilities (UNCRPD)
‘L’ and ‘P’s rights were also protected under the UNCRPD (ratified in the UK in 2009), an international legal agreement which promotes and protects the human rights of disabled people. It covers a range of areas including Article 12 (para 2) which states that persons with disabilities enjoy equal recognition before the law in all areas of their life. This includes their right to relationships and if they desire, a family (United Nations, 2016) (PCF:5.2).
In 2017, the UK’s progress against the Convention was reviewed by a UN Committee. One of the areas of concern noted was that there is insufficient transparency on what the UK is doing to ensure that the rights of disabled people will be protected as the UK leaves the European Union (Equality and Human Rights Commission, 2018). As post-Brexit social work practitioners, we will have to monitor this situation closely (PCF:8.1, HCPC:6.1, 13.3).
Legal Mandate: The Care Act 2014
Adult protection procedures under the Care Act 2014 provided an essential framework in this case for multi-disciplinary discussion on the management of risk. As ‘L’ and ‘P’s caregivers, we had to strike a balance between protecting their rights to a sexual relationship and safeguarding them from abuse, working with the underpinning principles of the Care Act 2014 (PCF:5.2, HCPC:2.5, 4.5).
We worked in accordance with the first principle (empowerment) by encouraging ‘L’ and ‘P’ to participate in the assessments of their needs including safeguarding. When ‘L’s lack of capacity was established but prior to her receiving the necessary education to improve it, Unit X’s duty was to raise a safeguarding alert to the local authority and to place ‘L’ on 1:1 observations (principles two and four: prevention and protection) Staff working with ‘L’ and ‘P’ were aware of these safeguarding requirements under the law and in organisational policy, and knew that these overrode their duties of confidentiality (principle six: accountability). The local authority had several duties and powers to investigate as ‘L’ was deemed to be ‘at risk’ because of her mental disorder and was therefore vulnerable to being harmed by either her own behaviour or that of ‘P’, who had capacity to consent. Once our safety measures had been explained to them however (principle five: partnership), they were satisfied that a Section 42 enquiry was not needed and that the measures we had taken were proportional to the risk (principle four) (PCF:5.3, 5.2, 8.2, 8.6).
Sexual Offences Act 2003
Sexual offences legislation attempts to strike the balance between protection and empowerment and changes have been made in recent years to establish this equilibrium. Under the Sexual Offences Act 1956, Section 7 (Stationery Office, 1956), it was an offence for anyone to have sex with a female who was mentally ill, however this approach was criticised for being oppressive by not allowing those with capacity to make their own decisions and it was weighted heavily against women (Hall and Yacoub, 2008). The Sexual Offences Act 2003 (Stationery Office, 2003) rectified these issues by allowing consensual intercourse for those adults with LD with capacity and by treating men and women equally in matters of consent. It also deemed sexual activity with someone lacking capacity by someone with capacity to be a sexual offence for the first time in English law (PCF:8.1).
Despite the improvement on previous law, it is criticised by some as still lacking in specificity. Little guidance is provided as to its application where both participants have mental illness or learning disability, such as with ‘L’ and ‘P’. Furthermore, it makes no allowance for the lack of sex education that a ‘perpetrator’ with mental illness or LD might have received, and how this may affect their sociosexual behaviour (Wheeler, 2004, Hall and Yacoub, 2008) (HCPC:4.5).
Ethical dilemmas
I considered the ethical dilemmas that arose during this piece of work by applying Beauchamp and Childress’s 2001 ethical framework. This contains four underpinning principles: respect for autonomy, beneficence, non-maleficence and justice (HCPC:13.4). I also worked to the requirements of value and ethics as set out in the PCF and the HCPC.
The first ethical dilemma that arose was ‘L’s parents objecting to her receiving sex education due to their religious and cultural beliefs, however ‘L’ wished to receive it having received very little previously. I was required by the MCA to provide this education to ‘L’, as well as being bound by the ethical principles of social work which require practitioners to involve service users in their care and to respect their autonomy (Beauchamp and Childress, 2001). I respected ‘L’s wishes to keep her sex education private from her family (PCF:3.1, 2.1, 2.3, 2.4, 2.5, 2.6, HCPC:7.1). This was in accordance with the organisation’s confidentiality policy and the Data Protection Act 1998. In addition, because Unit X provides a public service, ‘L’s personal information was protected under the Human Rights Act 1998, in line with the European Convention on Human Rights (Article 8). I also met the HCPC (2017) requirements for confidentiality in this way and I gained consent from ‘L’ to undertake this piece of work with her prior to commencing.
The second ethical dilemma arose when ‘P’s parents asked staff to ensure that he refrain from a sexual relationship because they felt he was too immature to engage in it. I listened to their concerns and explained to them during his Care Pathways Approach (CPA) meeting at his request that he had the capacity to make that decision. This caused conflict between myself and his parents however I adhered to Beauchamp and Childress’s (2001) principles of respect for autonomy and beneficence (PCF:2.1, 2.3, 2.4, 2.5, 2.6, HCPC:13.4).
Case Law
Local Authority X v MM & KM (2007) involved a woman with mental health diagnoses, whom the local authority wished to safeguard against her partner over concerns of exploitation, however she wished to continue their relationship. The judge reviewed the relevant statute and case law and acknowledged the difficult balance between protecting MM and oppressing her. He argued that relieving her of one type of abuse could place her at risk of another – oppression at the hands of the state. He also questioned the purpose of making somebody safer if doing so makes them more miserable (Royal Courts of Justice, 2007). This was interesting as ‘L’ also became miserable when placed on 1:1 observations which effectively ended her sexual relationship with ‘P’ (PCF:7.10).
In D Borough Council v AB (2011), the issue of the mental capacity to consent to sexual relations in adults with LD arose again. This case advanced case law by considering capacity to consent to sex for the first time since the introduction of the MCA. The judge assessed previous case law involving capacity to consent to sex and concluded that this only requires an understanding of the mechanics of the act, the health risks involved and the possibility of pregnancy. This case is relevant to my placement case as it considers for the first time the issue of capacity to consent to sexual relations following the introduction of the MCA and justified the test used to assess this (Curtice & Crocombe, 2013).
It is interesting to question whether the capacity to consent to sex is a blanket decision or whether it is person-specific. In Regina v Cooper (2009), Baroness Hale argued: ‘it is difficult to think of an activity which is more person and situation specific than sexual relations. One does not consent to sex in general. One consents to this act of sex with this person at this time and place’ (REF). In IM v LM (2014), however, the Court of Appeal argued that they could not be expected to deliver constant decisions regarding someone’s capacity to consent to sex with a particular partner on a particular occasion as that level of intervention would be oppressive and impractical; it would be worse yet still to enforce a blanket decision that someone was lacking in capacity to consent to sex altogether (REF).
This raised the question of whether the capacity to consent to sex of other residents on Unit X should be person-specific in future or whether the blanket decision is sufficient.
Policy
Public policy for adults with LD promotes their right to sexual relationships, balanced against the responsibility of services to safeguard them (DoH, 2001). In recent years, several initiatives and strategies have been introduced to improve the lives and enforce the rights of people with LD. Valuing People (Department of Health, 2001) and its successor Valuing People Now (2009) reinforced the legal and civil rights of adults with LD. The latter took a human rights approach that emphasised the right of adults such as ‘L’ and ‘P’ to form all kinds of relationships (where capacity is not an issue) and the importance of providing accessible sex education (Department of Health, 2010). Setting the Boundaries (Home Office, 2000) advocates that vulnerable adults are afforded the right to a private and sexual life, rights protected by the ECHR (REF). Setting the Boundaries also recommends a statutory definition of capacity which reflects both knowledge and understanding of sex and its broad implications. In A Life Like Any Other? (2008) the Joint Committee on Human Rights noted that adults with LD are especially vulnerable to breaches of their human rights and No Health Without Mental Health (2011) sets out one of its key principles as tackling societal attitudes towards people with mental health problems. Closing the Gap: Priorities for Essential Change in Mental Health (2014) aims to improve the planning and delivery of local mental health services to benefit service users by stamping out discrimination (Department of Health, 2014).