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MS, SEX, SEXUALITY and INTIMACY

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MS, SEX, SEXUALITY and INTIMACY MS, SEX, SEXUALITY and INTIMACY MENU Background to this guide 1 Defining ‘normal’ 2 sexual function MS-related sexual dysfunction MS, SEX, 3 Why we should ask about 4 sexual health and wellbeing SEXUALITY and 5 How to take a sexual history Assessing someone with MS- INTIMACY 6 related sexual difficulties Supporting the partner 7 Medications that can 8 affect sex Practical strategies to 9 suggest to the patient How to maintain or restore 10 intimacy Sexual diversity: 11 what is normal? A Consensus Guide Law and ethics for Healthcare Professionals by 12 Healthcare Professionals 13 MS and contraception 14 Top tips and resources Biogen Idec have paid for the design, development and printing 15 References of this item, but have generated none of the content. MS, SEX, SEXUALITY and INTIMACY MENU Background to this guide 1 A person’s right to a good quality sex life: Defining ‘normal’ 2 sexual function • The right to love and be loved 3 MS-related sexual dysfunction • The right to touch and be touched Why we should ask about 4 sexual health and wellbeing • The right to share intimacy 5 How to take a sexual history • The right to be a sexual human being Assessing someone with MS- 6 related sexual difficulties Supporting the partner 7 Medications that can 8 affect sex Practical strategies to 9 suggest to the patient How to maintain or restore 10 intimacy Sexual diversity: 11 what is normal? "I'm 100% behind the idea of promoting 12 Law and ethics disabled people as ordinary, sexy, 13 MS and contraception passionate beings." Lesley Betts, person with MS 14 Top tips and resources 15 References MS, SEX, SEXUALITY and INTIMACY 1 Background to this guide MENU Background to this guide 1 Defining ‘normal’ 2 Defining ‘normal’ sexual function 2 sexual function MS-related sexual dysfunction 3 3 MS-related sexual dysfunction 4 Why we should ask about sexual health and wellbeing Why we should ask about 4 sexual health and wellbeing How to take a sexual history 5 5 How to take a sexual history Assessing someone with MS-related Assessing someone with MS- 6 6 related sexual difficulties sexual difficulties Supporting the partner 7 7 Supporting the partner 8 Medications that can affect sex 8 Medications that can affect sex 9 Practical strategies to suggest Practical strategies to to the patient 9 suggest to the patient How to maintain or restore 10 intimacy 10 How to maintain or restore intimacy Sexual diversity: 11 what is normal? 11 Sexual diversity: what is normal? 12 Law and ethics 12 Law and ethics 13 MS and contraception 13 MS and contraception 14 Top tips and resources 14 Top tips and resources 15 References 15 References 3 MS, SEX, SEXUALITY and INTIMACY Introduction Don’t assume that somebody is or isn’t having sex. MENU Open the door. Maybe say something like: ‘Some of my patients find that sex is an issue for them and Background to this guide 1 “Don’t assume that they find it helpful to discuss this. If you feel this way I would be very happy to discuss this issue with you.’ Defining ‘normal’ somebody is or isn’t having 2 sexual function This enables someone to talk about this issue and sex. Open the door. Maybe also normalises it, so the patient can see that they 3 MS-related sexual dysfunction say something like: ‘Some of are not the only one. Don’t assume that just because a person appears Why we should ask about my patients find that sex is an 4 sexual health and wellbeing issue for them and they find it confident in certain areas of their life that they will be confident enough to bring up the issue of sex and How to take a sexual history 5 helpful to discuss this.” sexuality with a doctor or HCP. They may not. Assessing someone with MS- It is your job to give the patient permission to bring 6 related sexual difficulties up this subject. This is a very important role for the Supporting the partner HCP. It can be difficult enough for a non-disabled 7 person to talk about sex, let alone when MS is part of the situation as well. 8 Medications that can affect sex You don’t have to know all the answers. You need to Practical strategies to know how to listen, how to open the conversation 9 suggest to the patient and when to refer somebody on − or say that you How to maintain or restore don’t know the answer but you will find out. Or 10 intimacy maybe there is somebody else in your practice who Sexual diversity: has a bit more experience. 11 what is normal? Be honest with yourself about what stereotypes 12 Law and ethics or hang-ups you have that could become barriers between you and your clients. Look at how you 13 MS and contraception deal with these barriers − counselling for health professionals is very valuable, as is peer group work and teamwork. Make discussing sex and sexuality 14 Top tips and resources something that you as a team do, so that you can gain support and information from each other. 15 References 4 MS, SEX, SEXUALITY and 1 Background to this guide INTIMACY There is a wealth of information about sex and But sexuality is so much more. As Girts (1990) sexuality, implying that it’s easy to talk about, says: ‘sex is something we do and sexuality is MENU find out about, and that everyone is having it something we are.’ Background to this guide without difficulty, shame or guilt. But we know 1 This is important; it demonstrates that whilst that this is not the case for men and women sexuality includes sex it is more than the act Defining ‘normal’ affected by MS. Sexual health and sexual of intercourse. People are sexual beings from 2 sexual function wellbeing are essential aspects of MS care and birth to death; sexuality is a complex concept management if patients are to have a good 3 MS-related sexual dysfunction to articulate and often generates a highly quality of life. personalised meaning. Like intimacy, it is Why we should ask about Sexuality connects us to a deeply important part dynamic, changing over time and sometimes 4 sexual health and wellbeing of ourselves; it is a universal concept, common as a response to life experience. Sexuality is a to all human beings, whether experienced personal journey over the course of a lifetime 5 How to take a sexual history or inexperienced, regardless of age, gender and however it changes, it is important to health Assessing someone with MS- or ethnicity. Consultations with healthcare and wellbeing. 6 related sexual difficulties professionals (HCPs) can provide a confidential The World Health Organization (WHO, 2002) Supporting the partner space to discuss sexual health problems. 7 defines it this way: Intimacy means different things to different “Sexuality is a central aspect of being human Medications that can people at different times. It changes as the 8 affect sex throughout life and encompasses sex, gender individual is exposed to different experiences like identities and roles, sexual orientation, eroticism, Practical strategies to disease and ageing. Intimacy can be cognitive – 9 suggest to the patient pleasure, intimacy and reproduction. Sexuality when two people exchange thoughts, share ideas is experienced and expressed in thoughts, How to maintain or restore and enjoy similarities and differences of opinion. fantasies, desires, beliefs, attitudes, values, 10 intimacy “Sex is something we Intimacy can involve mutual activities. There is behaviours, roles and relationships. While Sexual diversity: also sexual intimacy, but this is so much more sexuality can include all these dimensions, not do and sexuality is 11 what is normal? than sexual intercourse. all of them are always experienced or expressed. something we are.” 12 Law and ethics Terms associated with sexual health are often Sexuality is influenced by the interaction of misunderstood or misinterpreted. Sexuality has biological, physiological, social, economic, 13 MS and contraception lost its broad meaning and is now commonly political, cultural, ethical, legal, historical and used to identify an individual’s sexual preference. religious and spiritual factors.” This often puts the HCP off asking about issues 14 Top tips and resources As specialists in regular contact with people with involving the word ‘sexuality’, because it is often MS, we have an obligation to enquire about any misconstrued by the patient. 15 References sexual difficulties the patient is experiencing. 5 MS, SEX, Authors SEXUALITY and RGN, BSc (Hons), Lecturer INTIMACY How can we claim to provide holistic care if we Nicki Ward-Abel are not assessing sexuality and intimacy? We Practitioner, Birmingham City University and should not leave it to ‘someone else’ to explore. Queen Elizabeth Hospital, Birmingham MENU NICE guidelines for the management of multiple John Pohorely RGN, RMN, MS Specialist Background to this guide 1 sclerosis in primary and secondary care (NICE, “Sexual wellbeing Nurse, Frimley Park NHS Trust, Surrey 2014) state: refers to the patient’s Helena Brown RGN, BSc (Hons), Defining ‘normal’ 2 sexual function “Every person (or couple) with persisting sexual perception of their MS Specialist Nurse, Walthamstow dysfunction should be offered the opportunity Sian Locke RGN, BSc (Hons), MS Clinical 3 MS-related sexual dysfunction sexuality, sexual life, and to see a specialist (with particular expertise in Nurse Specialist, The Helen Durham Centre, sexual problems associated with neurological sexual relationships. It Why we should ask about Cardiff and Vale 4 sexual health and wellbeing disease) and offered, as appropriate, advice on is important that people lubricants and the use of sexual aids, and other Lesley Catterall RGN, MS Specialist Nurse, How to take a sexual history feel they have good 5 advice to ameliorate their sexual dysfunction.” Bletchley Community Hospital, Milton Keynes Sexual wellbeing refers to the patient’s sexual wellbeing if they Katrina Potter RGN, BSc (Hons), MS Assessing someone with MS- 6 related sexual difficulties perception of their sexuality, sexual life and are to live with a good Specialist Nurse for Kent Community Health sexual relationships.
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