Talking about sex, sexuality and relationships (PDF)

Talking about sex, sexuality and relationships: For those working with young people with life-limiting or life-threatening conditions 2019 Guidance and Standards  Talking about sex, sexuality and relationships: Guidance and Standards Principle authors: Maddie Blackburn, Lizzie Chambers, Alison Cooke, Sarah Earle, Claire de Than and Lucy Watts With particular thanks to: Members of The AdversiTeam and The Open University Sexuality Alliance, see Appendix 6 Legal Advisors Claire de Than and David Raeburn Acknowledgements: The authors would also like to extend sincere thanks to all the young people who gave generously of their time to take part in the focus groups that informed this guide. Thank you to the Royal College of Nursing (RCN) for their constructive and critical feedback. Disclaimer: Although The Open University with members of The Open University Sexuality Alliance have taken all reasonable steps to ensure that the contents of this document are correct and up to date at the time of publishing, the information contained in the document is for general use only. Readers and users of this document should take appropriate steps to verify such information. No reader/user should act or refrain from acting on the information contained within this document without first verifying the information and as necessary obtaining legal and or professional advice. Any opinion expressed is that of The Open University. The Open University does not make any warranties, representations or undertakings about the content of any websites or documents referred to in this document or on the Open University website. Any reliance that you place on the content of this document is at your own risk and The Open University expressly disclaims all liability for any direct, indirect or consequential loss or damage you suffer from the use of or inability to use this document whether directly or indirectly resulting from inaccuracies, defects, errors, whether typographical or current omissions, out of date information or otherwise, even if such loss was reasonably foreseeable and The Open University had been advised of the same. You should be aware that the Law can change throughout the UK and you should seek professional legal advice, if necessary as and when the law changes. All names of young people are fictitious and case histories are adapted from examples in the workplace.  1 Talking about sex, sexuality and relationships Contents Foreword 2 Background and Context 3 Summary of the Standards 4 Part 1: Introduction 6 Part 2: For staff 10 Part 3: For organisations and managers 20 Part 4: The Law and some Case Examples 24 Part 5: Appendices 32 References 32 The sexuality journey 34 Top tips for people who are LGBTQ+ 35 Glossary of terms 36 Useful organisations 38 Members of The Open University Sexuality Alliance 41 “I want to live my life like others and get out, meet people, and have fun, including relationships.”  2 Foreword As young people with life-limiting conditions, we commend these sexuality guidance and standards for health and social care staff and organisations who support us. This guidance allows professionals to support our right to explore sexuality, sex and relationships, by enabling the professionals to know what type and level of support is (and isn’t) permitted by law. Sadly, young people like us often encounter misunderstandings of our sexual needs and desire for relationships. People don’t understand how important sexuality is for us and why, let alone have the knowledge and support on how to approach conversations about these topics and support us with this aspect of our lives. Sexuality is not rocket science, it’s part of everyday life. We hope that staff using this guidance will understand some of the issues that they may need to address in their daily work, and consequently feel more comfortable, confident and able to discuss sexuality with young people. Yes, talking about sex, intimacy and providing practical support for young people like us can be challenging, but such discussions shouldn’t be neglected or prevented. Staff need training and support. This third edition, evidenced based guide is underpinned by standards, has a number of useful sections with quotes from people with life-limiting conditions who contributed to its development. Appendix 3 includes some top tips for living with a life-living condition when you are LGBTQ+. It also includes case histories with discussion points, information about the law, lists of useful resources and guidance. This guide discusses the importance of being able to access sex education as well as information about sex, relationships and intimacy throughout life and includes topics like masturbation, basic human needs, embarrassing situations, and relationships. There just isn’t enough information and support out there, none more so than for young people with complex needs and physical limitations arising from their life-limiting condition. Whilst the internet is a wonderful tool, it doesn’t tell you everything and cannot replace continued discussion about these topics from knowledgeable staff who work with us and who can provide us with tailored support and advice specific to our own conditions and needs. It’s regrettable and shameful in the 21st century that sex and sexuality is still perceived as a taboo topic but this guide certainly aims to dispel those myths. The Open University Sexuality Alliance with members of the AdversiTeam have completed on-line education resources about sexuality and people with life-limiting conditions with the OpenLearn Team. There is some synergy between these resources and the on-line education resources, please see https://www.open.edu/openlearn/talkaboutsex. Happy reading! Lucy Watts MBE Master of The Open University Chair of The AdversiTeam 2019  3 Talking about sex, sexuality and relationships Background and Context Until recently young people with a life-limiting or life-threatening condition (LLTC) were not expected to live into adulthood. Science and technology have helped improve life expectancy (Beresford et al, 2014) and there are now an estimated 55,000 people age 18-40 years with a LLTC in the UK (Fraser, 2014, Fraser, 2012). As many young people with LLTCs are now living well into adulthood, it is not surprising that many want to know more about how their bodies develop and change over time and how this may impact on opportunities to have an intimate relationship in future. For many young people with a LLTC, sex may not necessarily be about intercourse but simply sharing an intimate relationship with someone else (Blackburn, 2018). It has been recognised for some time by health, social care and education practitioners (Care Quality Commission, 2019), that professionals find it very difficult to effectively support disabled young people with sexuality issues and that this is even more difficult for staff who are supporting young people with life-limiting or life-threatening conditions and their families. The Open University Sexuality Alliance (the Alliance) was formed in 2013 with the key purpose of developing sexuality resources for health, social care and education staff working with young people with LLTCs. The Alliance is a collaborative partnership which brings together representatives from public sector organisations, charities, service users and academics with an interest in providing holistic care for young people with LLTCs to provide comment, critical feedback, as well as experience from policy, practice and the law on all resources that are developed. The AdversiTeam, a group of young adults with LLTCs are co-researchers who support the work of The Open University Sexuality Alliance. The Open University with Together for Short Lives, working closely with the Alliance, published the first edition of ‘Talking about sex, sexuality and relationships: Guidance and Standards’ in 2015 and this is the third edition. Both organisations recognise the importance of people who are LGBTQ+ and this will feature more specifically in future work undertaken by The Open University Sexuality Alliance. However, Appendix 3 offers some specific tips about being a person who is LGBTQ+ and having a LLTC.  4 Underpinning Principles All young people with a life-limiting or life-threatening condition should expect: 1. To have the right to privacy, dignity and confidentiality. 2. To be treated in an age-appropriate way, regardless of their developmental stage and mental capacity. 3. To be able to address sexuality, intimacy and relationships with freedom from fear, guilt, shame and taboo. 4. To be appropriately supported from vulnerability to risk or harm. 5. To have the right to discuss, explore and receive relevant information about relationships, intimacy and sexuality, if that is their wish. 6. To have their individual needs and views at the centre of care and support, but with information and support provided to their families too. 7. To be able to approach professionals to discuss issues of sex, sexuality and intimacy without being judged. 8. To have support relating to sex, sexuality and intimacy throughout their life, including early discussions in childhood, as needs change and at the end of life. The Standards  5 Talking about sex, sexuality and relationships Standards for Staff All members of staff should: 1. Provide a life-long approach to providing information and education for young people including people who are LGBTQ+ who are LGBTQ+, ensuring that they have access to developmentally appropriate information to enable them to explore and develop their own sexual identity, irrespective of gender or sexual orientation. 2. Prepare parents/carers to be able to support young people with their emerging sexuality, intimacy and relationship issues. 3. Feel confident about communicating with young people about sexuality and relationship issues, undertaking training as necessary. 4. Be informed about practical support that they can safely and legally provide to young people, including the use of technology. 5. Be aware of cultural and religious beliefs of young people and how these may impact on young people’s sexual development and sexual expression. 6. Take professional accountability for ensuring that young people are supported with sexual issues, with awareness that avoidance of this can cause distress for young people. 7. Take responsibility for safeguarding young people in their care. 8. Adhere to codes of professional conduct. Standards for Organisations and Managers Organisations and service managers should: 1. Ensure that there are robust clinical governance procedures in place, and that staff are fully aware of them and know how to use them. 2. Ensure that staff are providing support that is within the law and principles of safeguarding, and that complies with professional codes of conduct. 3. Ensure there is a sexuality policy in place to support both staff and young people, which is regularly reviewed. 4. Provide training to enable their staff to support and advise young people and their families safely and effectively in a culture that welcomes open discussion about sexuality.  6 Part 1: Introduction The purpose of this document This third edition of Talking about Sex, Sexuality and Relationships aims to provide key standards for health, social care and education staff working with young people who have life-limiting or life-threatening conditions (LLTCs). It provides information about how best to support young people, and their families, in addressing sexuality, sexuality expression, relationships and intimacy, providing signposts to useful resources and examples of the law applied to practice. It is not a comprehensive ‘how to’ guide covering every aspect of sex, intimacy and relationships but aims to highlight some of the key issues that may arise, including some tops tips about living with a LLTC when you are LGBTQ+, see Appendix 3 and build confidence in how to approach the issue of sexuality with young people. It also sets out some of the key governance issues that need to be considered by organisations and service managers. In Part 4, there are case examples that highlight some of the legal and safeguarding issues. The guidance is not setting-specific, but has been designed for use by statutory and voluntary sector agencies, independent organisations as well as professionals who are employed through direct payments in the UK. The guidance may also be useful for parents, carers and partners. Who are the young people? For the purpose of this guidance the term ‘young people’ is used as a generic term to include children, teenagers and young adults. Where the term ‘young adult’ is used this refers to people aged 18 and over. The guidance is focused on the needs of young people who have life-limiting or life-threatening conditions (LLTCs). These include a whole range of different conditions, which have in common that they are likely to end in a premature death, either in childhood or early adulthood. Definitions of some of the terms used in this guide are included in Appendix 4. “The main things I see as important within the guidance is puberty, adolescence, reproduction, local laws plus Q and A section.”  7 Part 1: Introduction There are particular issues faced by young people with life-limiting conditions with regards to their sexuality, not least because their health conditions can have a serious impact on their physical development and their lives as a whole. So often their lives have been dominated by hospital appointments, procedures and treatments, making it difficult to maintain friendships and develop intimate or sexual relationships as they get older. There is also the added pressure of many conditions being degenerative, which means that many young people can have an uncertain life-course with reducing physical ability and sometimes also cognitive ability as they get older. Their needs for support to fulfill their wishes and aspirations as end-of-life approaches can make it all the more pressing to ensure that young people are supported to feel valued, loved, desired and to have meaningful relationships or sexual experiences. Some people with LLTC have a learning disability. Historically, it has been assumed that people with a learning disability may not understand sex (Hollomotz, 2009) and as such have had social and cultural norms imposed upon them to restrict and at times prevent development of their sexuality. This can make some people with learning disabilities very vulnerable, particularly to abuse, stigma or prejudice. Such negative attitudes and expectations may be detrimental to an individual’s perceptions of their own sexual identity, and consequently their opportunity to learn about and develop a positive, safe and healthy approach to sexuality and relationships. Equally, this sometimes results in discussions relating to sexuality being neglected or overlooked by those involved in caring for people with learning disabilities. There is sometimes a tendency when supporting young adults with profound learning disabilities to infantilise them – engaging with them as if they are young children. It should be recognised that young adults, whatever their developmental age, should be treated as adults and that sexual expression is an important part of their overall identity as a human being. Recently, there has been a marked shift towards inclusive, person centred approaches to care, and a move to overcome negative attitudes, improve understanding and awareness, and ensure each young person and those around them is able to engage with the development of a sexual identity in whatever way is meaningful to them, regardless of their gender, identity, culture or sexual orientation. “Yeah changes to body and things, also a bit about how to chat to adults not like children. I’m 20, some professionals still chat to me like I’m 12. It’s about not judging people on their stature but as adults.” “Over 18s are classed as adults so we should be able to be treated like adults, you know, and we have to make our own choices in life. We will learn from our mistakes...”  8 “... there are lots of different people out there with different needs, body shapes and developments. However the challenge is to share your sexual needs when people seem to think we are not interested in sex or question our ability to have sexual relationships, in fact any meaningful relationship. I guess it would be a massive step to recognise my unique sexual needs when they tend to ask my carer my needs, i.e. does he want sauce with that?” What is sexuality? “Sexuality is a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors” World Health Organization (WHO), 2006a There are many ways of interpreting sexuality. Human sexuality is how people experience and express themselves as sexual individuals. For the purposes of this document, The Open University Sexuality Alliance adopted its understanding of sexuality from the World Health Organisation. The breadth of the World Health Organization (WHO) framing speaks to the diversity of young people with LLTC, their families, and of those who support them. Most importantly, the WHO definition reiterates that all people have the capacity to be sexual if they so choose. “Staff need to be aware of ‘privacy’; respect and choice where sex is concerned.”  9 Part 1: Introduction Underpinning Principles All young people with a life-limiting or life-threatening condition should expect: ▶ To have the right to privacy, dignity and confidentiality. ▶ To be treated in an age-appropriate way, regardless of their developmental stage and mental capacity. ▶ To be able to address sexuality, intimacy and relationships with freedom from fear, guilt, shame and taboo. ▶ To be appropriately supported from vulnerability to risk or harm. ▶ To have the right to discuss, explore and receive relevant information about relationships, intimacy and sexuality, if that is their wish. ▶ To have their individual needs and views at the centre of care and support, but with information and support provided to their families too. ▶ To be able to approach professionals to discuss issues of sex, sexuality and intimacy without being judged. ▶ To have support relating to sex, sexuality and intimacy throughout their life, including early discussions in childhood, as needs change and at the end of life.  10 Part 2: For staff This section of the guide sets out some key information and guidance for practitioners and provides some sentinel standards for them to use to reflect on their own practice. The standards for practitioners should be read in conjunction with the underpinning principles. Sexuality can be a challenging and sensitive discussion area for many people and not least for those supporting young people with life- limiting or life-threatening conditions and their families. However, staff should be aware of and be prepared to discuss the sexual needs of the young people they are supporting in a non-judgmental way. While all young people should expect an open, non-judgmental, non-prejudicial approach from professionals, wherever they work, it should also be recognised that the rights of individual members of staff should be respected, so that they are not forced to compromise their religious or cultural beliefs. Standards for Staff All members of staff should: 1. Provide a life-long approach to providing information and education for young people including those who are LGBTQ+, ensuring that they have access to developmentally appropriate information to enable them to explore and develop their own sexual identity, irrespective of gender or sexual orientation. 2. Prepare parents/carers to be able to support young people with their emerging sexuality, intimacy and relationship issues. 3. Feel confident about communicating with young people about sexuality and relationship issues, undertaking training as necessary. 4. Be informed about practical support that they can safely and legally provide to young people, including the use of technology. 5. Be aware of cultural and religious beliefs of young people and how these may impact on young people’s sexual development and sexual expression. 6. Take professional accountability for ensuring that young people are supported with sexual issues, with awareness that avoidance of this can cause distress for young people. 7. Take responsibility for safeguarding young people in their care. 8. Adhere to codes of professional conduct. Ethics It should be noted that law and ethics are inextricably linked but different. Ethical principles are founded on maximising benefit and protecting people, particularly more vulnerable people, such as young people with LLTCs, from any risk of harm. This does not always run in parallel to the law and staff may find it difficult when their own moral or ethical values are in conflict with the law. The support needs of an individual young person with a LLTC should be considered alongside those of all other children and young people who are being cared for within an organisation (www.sexualrespect.org). The exception to this is where the law requires the staff member to act in a particular way, or to refer the issue to another staff member.  11 Part 2: For staff Information and life-long learning Due to advances in medicine and related technologies, many children and young people with LLTCs are now living beyond adolescence, although life expectancy for many may still be uncertain. In reality, many young people with a LLTC will die in early adulthood and may want to experience sex and intimacy, whatever that means for each individual, within the short time that they have. For those young people with an uncertain life-course who are contemplating parenthood, the importance of professional signposting to appropriate genetic screening and counselling (if desired) can offer support. This will be important whether end-of-life is imminent or still some time ahead. Young people are very clear that their sexuality is an important part of their identity and they often want to be able to discuss sex with trusted adults during childhood, their teens and their adult years. Comprehensive sex and relationships education involves learning about the emotional, social and physical aspects of growing up from an early age and throughout life, however uncertain the life- course may be. This includes learning about bodies and how different bodies develop, puberty, gender differences, relationships, sex, sexuality and sexual health. New guidance in England related to sex education (SRE) will soon become compulsory in schools for both disabled and non-disabled pupils. Schools will be obliged to meet their responsibilities to enable disabled pupils to access SRE education and prepare them for adulthood (DfE, 2019). Parents and practitioners should ensure that they can provide a safe and appropriate environment in which conversations can happen, taking into consideration the young person’s age, condition and ability to understand. Given the breadth of the World Health Organization definition (WHO, 2006a), it can feel overwhelming to know where, and at what point to start discussing sex, but it is important that these discussions do take place and that consideration is given to whether communication aids may be required, such as the Makaton Sex Education Symbols Book (2008). Young people want to have conversations that include the opportunity to acquire information and knowledge, develop skills, and explore their emotions and their values. Much of the education about sex and relationships that young people receive (if they receive any) often only focuses on the biological aspects of sex. Young people have repeatedly said - in our focus groups and in the literature - that they want a more holistic approach to their sexuality and want meaningful conversations with professionals, parents/carers and with their peers (Brook, 2014; Scope, 2019). For example, some young people with LLTCs may want information about the challenges that they could face with their physical or sensory development and how their condition may impact on their sexuality and sexual functioning. “It would be good to capture some sexual health things within standard learning, like disability, body image, connections and sexual beings within primary and secondary education.” “I am interested in how things work regarding a carrier of a condition, can it skip, will it skip etc. the few times I have tried to ask more the conversations have been shut down not really sure why? It’s not a blame thing it’s for my understanding.” “I get the feeling that some people (family and professionals) don’t feel I need to know about genetic information partly due to their perception that I am not sexually active so no need and also because I have a short life span and won’t need info as I won’t have children – go figure…”  12 Young people may obtain information and advice about relationships and sexuality from many sources and different types of media, including from their peers, parents, carers, personal assistants (PAs), professionals, books, leaflets, magazines, phone apps and online. However, this information may not always be up to date or reliable and can be bewildering. Staff and indeed parents/carers should exercise caution about the use of the internet and guard against young people being exposed to damaging material or dangerous ‘advice’. Young people with LLTCs may be particularly vulnerable because their sexuality has not been recognised and they may not have had appropriate guidance. For those young people who are questioning their sexual orientation and/or gender identity, reliable information may be even more difficult to access. Staff should ensure that they use reliable sources of information, so that they can feel confident about their knowledge (see Appendix 1). They should also ensure that young people know how to access information themselves, as well as encouraging them to self- evaluate whether the information is trustworthy. What does the law say about sex education and information? “The Mental Capacity Act, 2005 requires that all practicable steps should be taken to help a person make a decision and this includes providing sex education to those who lack capacity to engage in sexual activity” (Griffith and Tengnah, 2013). An updated version of the Mental Capacity Act Code of Practice should be available in late 2020. As stated above, from 2020, schools will be obliged to meet their responsibilities to enable disabled pupils to access Sexual and reproductive education and prepare them for adulthood (DfE, 2019b). The right to freedom of expression under Article 10 of the European Convention on Human Rights also requires people to be given access to information which they need in order to make decisions about their own lives. Professionals must work within the remit of current legislation, seeking support as needed to ensure safety. Requirements will differ depending on the person’s age, and professionals should remain mindful of an individual’s capacity to consent to particular decision making or risk-taking situations in the context of different stages of their transition from childhood to young adulthood and beyond. This must include strategies to assess an individual’s ability to understand, retain and communicate information relating to an issue. The law says that young people are entitled to receive confidential sexual health advice and/or treatment, even if they are under 16, provided that certain criteria, known as Fraser Guidelines (see appendix 4) are met. The Sexual Offences Act 2003 [Section 14(2) and 14(3)] is very clear that it is not an offence for an adult to communicate with young people about sex and sexuality if they are genuinely acting in the best interests of the young person and intend to: a) Protect the young person from a sexually transmitted infection b) Protect the physical safety of the young person c) Prevent a young person from becoming pregnant d) Promote the young person’s emotional well-being by the giving of advice Careful planning by the multidisciplinary care team may be of benefit, for example considering the use of an advocate or an interpreter, and there may be local resources to be aware of such as education groups or dating agencies. “It should be appropriately early when questions begin to happen, primary school perhaps, even just to recognise that questions and changes begin around now – at a time where kids begin to notice differences.”  13 Part 2: For staff “I’d quite like brothers and sisters to have access [to information] too, if they knew more about things they might feel easier chatting to me.” Supporting parents/carers and partners Parents play an important role in teaching their children about sex and relationships, helping them cope with the emotional and physical aspects of growing up and preparing them for the challenges that sexual maturity brings. It can be difficult for some parents to find the confidence to deal with their child’s emergent sexuality and to find that their child may no longer want them to provide personal care in their teens and beyond. Parents may have their own perceptions, prejudices and fears about their child’s sexuality and it may be helpful for both young people and their parents to have support from professionals to talk about these. Staff should ensure that parents are provided with information and support to enable them to respond to their child’s questions and reassure them as well as feel confident about enabling their child to build and maintain their privacy and personal dignity. Some young people will have partners or may be engaged or married. It is important that partners are involved in discussions so that they are part of open and honest communication and learn about the practicalities of having a safe and enjoyable sexual relationship. Communication Practitioners should recognise the broad scope of support that may be required to communicate well with young people, including those with learning disabilities. Their organisations or managers should encourage them to do so safely and effectively through the use of policies, guidance and opportunities for regular training and reflection. Promotion of positive perceptions of sexuality within the care environment will translate into a confident and non-judgemental approach to supporting sexuality, which in turn will ensure young people have the freedom to express their needs in an open and honest way to achieve the most appropriate support. Staff need training in how to communicate with young people about sexuality, and opportunities to practise having conversations in order that they can offer appropriate support. Organisations should consider having Sexuality and Relationship Champions as points of contact for people whom they support. There are a range of tried-and-tested methods and approaches that work well when communicating with young people about sexuality (SCOPE, 2019) (see Appendix 5). Staff should familiarise themselves with these and adapt them into their own communication style so that they feel comfortable when talking to young people. “… I find it difficult to know who I can ask for information and practical help. At present I feel that I can only chat with very few people and I’m totally embarrassed about the prospect of even thinking about sexual activity and the ripple of wider discussions”