The 20th meeting of SHADA was held in London on Wednesday 15th April 2015, 11am to 4pm. The venue is the accessible City University in Faringdon, London.
We focused on sex and neurological conditions and sexual freedoms in residential care homes. If you have any unique expertise and would like to speak. please let us know.
Also, if you are working on a new project and want help, or have something exciting to report back on, please get in touch.
Minutes of the 20th Meeting
Wednesday 15th April 2015
Dr Tuppy Owens (convenor and speaker) – Outsiders – Tuppy started SHADA with Katie Wiltshier after she felt alone answering calls on the Sex and Disability Helpline. Her recent book Supporting Disabled People with their Sex Lives: A Clear Guide for Health and Social Care Professionals has sold over 100 copies so far.
Ally Richards – clinical psychologist for adults with brain injury – interested in meeting people who are involved with SHADA.
Helena Barrow – nursing home manager for 15 years. Was chair of SHADA, had period of ill health, and has now returned to SHADA.
Roger Clements – retired obstetrician and gynaecologist, now works as an expert witness for babies injured at birth and women who become disabled during childbirth. Currently writing a book aimed at lawyers in Ireland to improve their practice.
Miguel Tudela de la Fuente – FPA – project manager for good sexual health project for people with learning disabilities in Westminster.
Claire de Than (speaker) – human rights lawyer and lecturer, now a professor in Jersey – speaking at many conferences about the sexual rights of people with disabilities.
Calin Cristea – worked in IT for over 20 years, suffered with severe depression in 2009, found that visiting a sauna helped lift his mood and told his GP this. Became unemployed in 2013. Now he is offering people coaching, mentoring, some Neuro Linguistic Programming (NLP).
Michael Ballard – director of Sex with a Difference with Lorraine Stanley (see below) – has an engineering background. Was carer for ex-partner for many years, had breakdown, relationship broke down, became a swinger and likes this freedom.
Lorraine Stanley – director of Sex with a Difference, which is a social enterprise company, exhibiting at Naidex at end of April. 10% of profits will go to the Outsiders Trust. Bought a mobile library for training purposes. Has linked in with local genitourinary medicine (GUM) clinic.
Els Payne (coordinator for SHADA) – massage therapist/Outsiders trustee – became interested in SHADA after massaging people with disabilities
Susan Quilliam – wrote the “New Joy of Sex” and “How to choose a partner”. Sees clients for counselling regarding relationship problems. Patron of Outsiders. Updates Sexual Respect Toolkit with Tuppy.
Eliot Lamb – (minute taker) brain injury case manager / OT, Independent Living Solutions Ltd – looking to raise the profile of sexual issues within his workplace – www.indliv.co.uk
Nessa Muthi, Alex Cowan, Sally Lee, Kian de la Cour, Sue Newsome, Glen Miles, Adam Thomas, Dion Blackler, Helen Robertson, Rebecca Laurie, Maddie Blackburn, Helen Dunman, Diego Soto-Miranda, Suebie Willbourn, Tim Gilbert, Katie Wiltshier
ACTION (including ongoing from last meeting):
From past meetings:
Feedback still needed regarding the Sexual Respect Toolkit – www.sexualrespect.com – please check it out and let Tuppy know your feedback.
From this meeting:
All SHADA members to e-mail Tuppy prior to the meetings briefly stating why they will be attending the meeting and what they would like to gain from attending and being part of the group.
Miguel will meet with the three SHADA Working Party members who work with people with profound learning disabilities to network and share resources.
Eliot to ask Sally Lee for feedback about the sexual wellbeing and social work conference.
Claire de Than will write to the government commenting that sex education should be inclusive and include people with disabilities.
Miguel will send a DVD about masturbation (he teaches clients about masturbation) and information on social stories about masturbation (comic style with step by step instructions) to Tuppy.
All SHADA members – please contact Ally Richards about success stories of professionals working with clients concerning their sex lives.
Tuppy will ask her IT guy to set up a discussion forum for the SHADA website.
The next meeting will be on Friday 6th November 2015 – venue to be confirmed
Introductions All present introduced themselves – see above.
Projects and News
SHADA Working Group – Tuppy commented that people often cannot attend so the group needs to go with what the attendees bring. Three attendees work with people with profound learning disabilities: they will meet again to share ideas and resources. There continues to be fear of the law. Miguel will meet with the three attendees mentioned.
Pad free time – Katie Sarra has proposed that adults who wear incontinence pads should be given pad free time. Miguel added that he has done similar work with a client allowing the client pad free private time and used music at the same time.
Freedom of Information request letters – these letters have been sent to the Health & Wellbeing Boards asking if and how they are supporting people with disabilities with their sexual needs. Once this stage of the project has been analysed letters will be sent to health and social care professionals’ governing bodies asking the same questions.
Public Health – Miguel commented that local authorities have taken on the role of managing public health but they do not understand it. Charities have been affected by funding cuts. The Family Planning Association has been downsizing and has become a lobbying group and continues to offer training. FPA helpline has closed. FPA share some services with Brook. Government bodies are not communicating with each other. In Ipswich HIV and Aids is tested locally but other STIs are tested 30 miles away.
Sexual wellbeing and social work conference – Eliot to ask Sally Lee for feedback about this conference.
Masturbation – legally parents cannot assist their teenagers with disabilities to masturbate. Boys ring the Sex and Disability Helpline asking how to masturbate. Gill Leno has suggested some helpful videos on the Outsiders website. Miguel will send a DVD about masturbation (he teaches clients about masturbation) and information about social stories (comic style with step by step instructions) to Tuppy.
Sex education – Claire de Than will write to the government commenting that sex education should be inclusive and include people with disabilities.
Activism and academia conference – Tuppy attended this conference last week and heard Gill Leno speak there; Tuppy said she was a great speaker. A professor at the conference agreed that research is needed to legitimise services to address sexual needs
Conferen.ces about human rights – Claire de Than has been speaking at lots of conferences recently. She has been giving the clear message that services need to meet the human rights of people. She has been doing interviews for radio and TV.
Law – Laura Lee (sex worker) is trying to overturn a law criminalising certain aspects of sex work. Claire de Than is trying to get a clear code on consent. A deaf blind person cannot legally be given sex education in a physical way: Claire is doing a piece for the Law Commission about this.
ASSECT, theAmerican Association of Sex Education, Councelling and and Therapy – Tuppy is doing an education session for this organisation in St Louis, USA this summer.
Media coverage – Tuppy recently took part in a debate on Radio Ulster with an evangelical person: the presenter and all the callers were on Tuppy’s side. Tuppy was on Radio 5 Live a week ago discussing sex and disability with Enhance the UK and Robert Hambrook from Leonard Cheshire. Amy Golden spoke on “Four thought” on Radio 4 last week; she had meningitis and had difficulties with relationships.
Benefits of sex – Miguel spoke about a man with autism he works with who visits a sex worker and this reduces his aggression.
Michael said that women often respond well to yoni massage.
Lorraine commented that orgasms are good for mood and extend life.
Research about strokes and sexuality
Ally Richards spoke about the research she did last year on this topic and told us the following:
Stroke is a major cause of disability in the world
Stroke involves a disruption of blood supply to the brain
Strokes can happen at any age but are more common in those aged 55 years and over
Risk factors include high cholesterol, diabetes, high blood pressure
Common consequences include weakness, loss of sensation, communication problems, difficulties with swallowing and eating, impaired cognition (concentration, memory, planning, organising), fatigue, incontinence, low mood, labile mood (marked fluctuation of mood) – it depends which part(s) of the brain that are damaged – all these areas can impact on sex
Findings from other research suggest that 30% to 40% of people who have had a stroke have less sex than prior to their stroke. They have reported lower sex drive, difficulty achieving orgasm, fatigue, decreased movement, impaired communication, change in role and identity, mood changes, partner becoming a carer and compatibility with an intimate relationship, self image, people being fearful that sex will cause another stroke (this last point is a myth).
The usual pathway for someone who has had a stroke is A & E to rehab in hospital to home. The treating team does not always include a psychologist. National clinical guidelines for stroke recommend that sex should be considered and reviewed but professionals are not obliged to follow these guidelines. This had not led to change yet! Sex problems are rarely identified by health professionals.
Ally’s research looked at sex from the perspective of health professionals, she interviewed 10 people using grounded theory method. She identified a main barrier is staff attitudes. The unit where she conducted the research was considering training options. The health professionals had barriers internal to themselves and also the environment was identified as a barrier.
Main findings from Ally’s research:
Professionals rarely brought up the topic of sex
Professionals used an indirect approach i.e. by talking about continence and sleeping arrangements – they used open and vague questions
Professionals who were more confident asking about sex were not bothered about not being an expert
Clients sometimes made a joke about sex to bring the topic up
Often clients just wanted space to discuss sex
Client and professional were waiting for the other person to raise the topic
Sex was not included on health professional’s assessment forms
There was no consequence for the health professional if they do not raise the topic
If the topic was raised it was usually around 6 months after the stroke but this is when interventions from services are reducing
Professionals were worried that clients would be offended or upset or embarrassed if the topic was raised but gave no examples of this
Professionals made assumptions such as the client was old and/or very disabled and therefore sex was not a priority
Ally would like to hear from SHADA members about success stories of professionals working with clients concerning their sex lives.
Lorraine asked her OT her thoughts about the topic of sex and she said the client would need to raise the topic.
Health professionals already have knowledge and skills in areas such as movement and pain (physiotherapists), equipment (OTs), communication (speech & language therapists) that could help them work with clients regarding their sex lives.
Health professionals are happy to talk about death and to complete risk assessments for suicide but not so comfortable regarding sex.
Not all professionals will be comfortable talking about sex and relationships and they need to be honest and open about this.
Barriers to talking about sex are not specific to stroke services, there is prejudice, ageism, pressure on services, etc.
Ally suggested that there should be a clearer referral pathway. We discussed if a leaflet for stroke units would be helpful. The Stroke Association do a leaflet stating that sex can be discussed, see “Sex after stroke” leaflet at https://www.stroke.org.uk/sites/default/files/F31_Sex%20after%20stroke.pdf
Tuppy has previously suggested a sex worker for touch for people who have lost the ability to speak but this is not happening yet.
Sexual freedom in care homes
Helena Barrow spoke about this topic. She commented that it is getting harder to support clients. She has tried to empower people to make their own decisions including about drinking alcohol, watching strippers, hiring sex workers but people in care are institutionalised.
Nancy Roper et al (1980) devised a model of nursing care which considers 12 activities of daily living including expressing sexuality but the area of expressing sexuality is not properly addressed by health professionals. Guidance says that health professionals should ask the client about sex i.e. do they have it? Do they want it? Health professional tend to put responses such as “wears lipstick”, “dresses well”. Helena commented that if she asked her staff to ask clients questions such as “do you have sex?” and “do you want to have sex?” her staff would report her. She added “but sex is primeval” and feels it is still demonised.
Helena said that the person enabling sex for a person with disability should not be the carer but needs to be an enabler such as a therapist or sex worker.
Helena used to be a member of the European Platform for Rehabilitation. At one of their meetings she asked about sexual enablement and no-one responded yet at the lunchtime break lots of people spoke to her about something or someone they knew related to sexual expression.
Helena said people are still not being empowered in care homes.
Helena added that care home workers are lowly paid and poorly trained generally. She thinks that there should be CCTV in all care homes to safeguard clients and staff.
Miguel reported that he worked with a woman with learning disabilities who was given a depot contraceptive injection and she did not know what it was for. Staff told her it was to manage her PMT. He added that this is abuse.
Tuppy has been helping Ciaran Jenkins (from Channel 4 News) to gain access to a care home where a horny 25 year old woman resident (who has a traumatic brain injury) was not allowed to have sex with anyone.
SHADA International and networking
Helena suggested that we need to market SHADA and said we are not empowering people with their sexual needs.
Tuppy said when SHADA International is launched online, we will have discussion groups, and she agreed to organise a Working Group on this topic for the summer.
Date of next meeting:
11am to 4pm on Friday 6th November 2015 in London