Report on meeting of 21st October 2013
ATTENDANCE LIST (with email addresses):
Dr Tuppy Owens (convenor, scribe and speaker) Outsiders
Adam Thomas (chair) – Elfrida Society
Katie Wiltshier (secretary) Occupational therapist and psychosexual therapist
Els Payne (coordinator) – Massage Therapist/Outsiders Trustee
Tim Gilbert – Independent Living Solutions –
Emma Moore- Chailey Heritage Foundation
Eliot Lamb – Brain Injury Case Manager / OT, Independent Living Solutions
Jon Clugston – Hereward College
Andy Shepherd – Hereward College
Claire Webb – Hereward College
Jacky Lawrence – sex worker
Diego Soto-Miranda – barrister with interest in Human Rights and Disability
Max Gordon – Elfrida Society
Jackie Bailey – Spinal Injuries Association
Asger Persson (speaker) Handisex, Denmark
Helen Dunman (Speaker) Chailey Heritage Foundation,
Ashley Savage (Speaker), Photographer
Harpal Bains, GP
Michelle Donald Sex Therapist
Joe Allen, counsellor
Dion Bleckler, St Johns Wood Hospital, neurology dept
Lawrence Shapiro, Disability Activist
Alex Cowan, Disability Consultant
Chris Kerridge, Operational Manager, Cherish Service, Children’s Disability Team, Brighton Council
Anji Page, Sue Baker – Ingfield Manor School, Helena Barrow, Lorna Couldrick, Steve Shears – Headway, Sue Newsome – sex worker/sexual advocate, Sally Lee social worker
ACTION (including ongoing from last meeting):
- Feedback still needed regarding the Sexual Respect Toolkit – www.sexualrespect.com – please check it out and let Tuppy know your feedback – firstname.lastname@example.org
- Helen, Tuppy and Diego to continue with efforts to work with CQC and Ofsted re. regulations around sexual expression.
- Health care professionals – please email Tuppy with any issues/barriers that you have been faced with around asking clients about sexual expression.
- Tuppy will produce a Sexual Respect Toolkit leaflet that can be taken to conferences. Please ask Tuppy for leaflets if you are going to any talks, conferences etc.
- Helen is looking for a life size anatomically correct dolls for teaching purposes – please let her know if you have any ideas where to find these.
The next meeting will be on Tuesday April 8th 2014. Venue to be confirmed soon.
Introductions All present introduced themselves and current projects.
- Matters arising from the minutes
2, Presentation by Asger Persson from Handisex, Denmark
Asger is a psychologist and sexual counsellor. He is also trained in nutrition. He moved from working with sex in a theoretical way to a more practical approach three years ago when he met a woman with muscular dystrophy. This woman could only use her little finger, and had been unable to experience sexual pleasure since her relationship had ended. This presented the question of how to deal with this situation as a professional.
Asger feels that we have a societal and professional responsibility to address the needs of people with disabilities. Sexuality is inborn and does not go away just because someone has a disability. It is a strong desire in some people and part of life fulfilment which can result in inappropriate sexual behaviour if these needs are not met/ignored.
Asger found that 90% of people with disabilities did not discuss sexuality. The only touch they received when growing up was washing. This can be damaging. In Denmark, rules were established in the 1990’s around rights and disability including sexuality – people with disabilities must not been denied the opportunity to experience their own sexuality and engage in sexual relations. This is now enshrined in law (this law now exists in the UK too).
There is also a 60 page document for health care professionals in Denmark – ‘Sex on the Agenda’. However it does not address needs of people with physical disabilities e.g. who cannot use their arms/hands.
In Denmark, social workers are obliged by law to assess sexual needs as well as other needs.
But….how does this work in practice?
If people are single, they can masturbate if they are able to. If not able to, there are various options – assisted masturbation, assisted intercourse, assisted bodily awareness.
The question is who should do the assisting? Masturbation should not ideally be assisted by parents/friends/daily carers. In Denmark prostitution is legal however there is fierce debate regarding whether people with disabilities can access sex workers. Health care professionals cannot contact sex workers on behalf of someone else which is a problem if someone cannot use a phone. Also, women are less likely to contact sex workers and staff can say ‘no’ to such requests.
In order to meet these needs, Asger and his colleagues from Handisex offer a variety of services. He does not see himself as a sex worker as he sees people to meet their orgasmic needs rather than providing a whole sexual service.
Assisted masturbation and intercourse – Asger researched special sex aids for people with disabilities. He has found Japanese and German products that can be attached to people. Asger has helped clients with attaching these aids. He also helps with assisted sexual intercourse such as positioning each person if they cannot do so themselves.
Asssisted bodily awareness – Asger will massage a client and awaken different parts of their body, to help them become aware of their erogenous zones. He also assists them to use a mirror to visually explore their own body.
Asper also does counselling and lecturing though is not a clinician. He uses a ‘whole body’ concept – how do you see your body? (I think this is what he meant)
Examples of his work
Case 1 - A female client in her 50’s with multiple sclerosis had never had an orgasm. Asger worked with her using a sex aid which he had to hold in place. During the first session she was able to have one orgasm, then multiple orgasms for a whole hour, during the second session. This showed that her sexual centre was still intact even though the rest of her body had been affected by her condition.
Case 2 – A couple with cerebral palsy who were gay and into fetish wanted help with their sex life. The couple didn’t want others to know about their sex life. Asger was able to work with them to help fulfil their sexual needs.
Case 3 – A young man with cerebral palsy could have an erection and ejaculate but could not feel the orgasm. However Asger helped him discover that he could feel an anal orgasm using a small vibrator.
Case 4 – A male who got regular erections but did not want to touch himself. Asger showed him how to use an aid called a ‘fleshlight’. This was attached the wall and he could relieve himself without touching his penis.
Working with people with cognitive difficulties
Denmark has sexual counselling for people with disabilities which includes guidance on helping people with cognitive difficulties to masturbate.
Asger worked with a client who had mental age of 4. He was trying to masturbate but was making his penis sore. He had very little language apart from four signs. Asger showed him lots of Danish films with sexual content. He also had a dildo with a foreskin so could show him the correct grip to masturbate.
Asger gave general suggestions to staff working with the client, including that his tight foreskin needed to be looked at. This would give the client the possibility of being able to masturbate.
How does he stay respected?
Asger looks at alternatives to using sex workers so his work is more accepted by society. He works with two female colleagues.
The important thing is how you present the information. There is an obligation to fulfil sexual needs so you need to find a way the government can accept what you are offering.
Asger sees his work as an alternative to sex work. He does not use his own body.
A survey in Denmark with sex workers in lots of different contexts showed that the worst thing was other people’s attitudes. There was an association with drugs, trafficking, rape, etc.
- It is important to engage people in discussion rather than bombard them with facts. For example that sex and sexuality are different – it is legal to be a paedophile but not legal to abuse children.
Discussion following presentation
How is the work funded?
It is not funded – clients pay privately or through an organisation for example helping to develop a sexual policy.
Assessment of capacity?
‘Yes’ or ‘no’ needed from client. When working with the man with cognitive client (earlier example), Asger asked what sign he would give if he didn’t want to do something. Client would show Asger the door or push him away. Asger also checked out his body language e.g. bored or interested when watching film as well as writing notes/filming what he did.
Impressive problem solving especially around assessing consent for client with learning difficulties.
Countertransference – what if the client is turned on by you as a therapist?
Asger has clear boundaries in his work so this is not an issue. When therapist have own clear boundaries it doesn’t matter if either the client or therapist is turned on in a session.
Some guidelines have come out of trying to address abuse between people with learning difficulties.
Professional indemnity insurance?
Asger has no insurance – there is no system in Denmark where someone could sue and bankrupt him if they were not happy with his work.
How have you managed to negotiate consent?
The more ‘hands on’ it is, the more consent you need. Asger needs written consent and a plan for what he is doing. If client cannot understand the plan, the care worker gets involved.
Principle – minimum involvement, maximum outcome.
Easier to work with people with physical disabilities than cognitive impairments.
Would your work be more effective if you had a physical disability?
Would be difficult to do this work with a physical disability. Body acceptance very low for people with a physical disability – Asger has found that most people want a partner without disabilities.
- 3. Presentation by Helen Dunman, Chailey Heritage Trust
Update on progress/projects since last meeting:
Body awareness project: Chailey has a lot of children at 16 yo with no body awareness. Most are doubly incontinent and have never seen themselves naked.
Helen is currently working with a manual handling expert on a project to get good quality mirrors in every bathroom. The aim is that each resident can see the whole of their body especially when they are being changed. Staff are being trained to empower students to ask questions and encourage dialogue.
Assisted masturbation and use of sex aids: Helen has looked into the legal situation and made recommendations. She has submitted these to the senior management group as yet has had no response.
Sex education for people with profound and multiple learning difficulties (severe physical disabilities and severe cognitive impairments such as mental age of 6 months old).
Helen worked with the mother of an 18 year old man who has a cognitive ability of a 2 month old. The man was masturbating before he slept and was very tired when he came to school. Helen spoke to his mother who was very practical. Her manager was also very supportive. Chailey has an obligation to provide support for him to masturbate. On this occasion the mother was able to advocate for her son, (he needs privacy in bed after his shower?) but many other young people have no advocates which makes it more difficult to meet their needs.
Communication: Helen identified that the voice aids were missing words to communicate sexual needs. A ‘private words’ book has now been developed. Students came up with the language that they wanted to use so they can express themselves.
Regulatory bodies – working with Care Quality Commission and Ofsted: Clear boundaries and clear guidelines are needed around sexuality policies – many are of little practical use. As options and guidelines are required to be useful, Helen contacted the CQC and Ofsted to ask for their advice.
The response from the CQC was ‘not within our remit’.
Helen has also contacted Ofsted about producing a curriculum for disabled people as part of their duty of care for educators providing full time education. She has spoken to an Ofsted consultant – work in progress.
Helen would like to get representatives from regulatory bodies and a small working party from SHADA to get some clear guidelines produced. The following questions are points for this discussion.
What would you expect to see in a Sex Education curriculum for severely disabled students in the 16-19 age bracket. (Given that it is inadequate to simply teach them ‘The facts of life’ our young people will and do ask how a sexual relationship can be possible for them.
2. I believe strongly that our students should be educated about the options that are available to them in the adult world with a full discussion on each eg. Online dating, sex aids , specialist sex workers etc. What is Ofsteds view on this ?
3. Some of the policies and curriculums I have seen have been rather woolly re. Sex and disability ,can Ofsted give an example of an outstanding example from a school/college.
CQC: Please clarify once and for all :
1 what they see as good practice in terms of staff ensuring that clients’ sexual needs are recognised and met. (Clients with severe physical disabilities).
2.How the CQC interprets the law and guides/trains staff in dealing with clients sexual needs.
3.What they would want to see in a Sexuality policy.
4.What are the recommended guidelines given by the CQC re. Sex workers coming to work with clients in a residential care home
Chailey is striving for excellence and providing outstanding education for all pupils. As part of this, questions about sex should be included during the ‘intake assessment’. The assessment is very detailed but currently does not include sex.
Discussion/ideas arising from presentation:
- Helen could write guidelines for the regulatory bodies and send them for comment.
- What does ‘within remit’ mean? CQC will take action if they think that people’s basic rights are at risk.
- Would it be better to lobby MP’s, etc as they have more power to change things on a broader scale. Miguel from FPA may be able to help. Could also target people in Parliament with physical disabilities.
- Asger has found that going through disability organisations has been helpful in Denmark.
- One barrier to progress is that current residents in adult facility are less vocal as not empowered to speak up. Change happens faster when residents ask for what they want. Also have lots of new staff who need training. An example of this is 2 adults in a relationship who both have profound physical disabilities and want to share a room at Chailey. They asked for this 3 years ago but are still not sharing. The difficulty is the couple are not assertive. Helen has advocated for them but as yet no change. She has written guidelines but these need to be approved by the CQC.
- Hereward were able to get approval from CQC by telling them the problem and what they proposed to do. However need written permission from CQC. Barrier re. permission when residents have no speech and significant learning disabilities. The couple need an advocate outside Chailey – perhaps Outsiders could help with this.
- ‘Right to privacy’ – how far do you extend this? Rights of other people who are involved with the disabled person? Need a test case to take to court. Until this happens we are relying on political/regulatory bodies.
- Need clear statistical evidence to argue the case.
- If a disability organisation will back up the cause, will have more access (success?) than an individual trying to change things.
- 10. Diego has kindly agreed to help with regulatory bodies meeting.
4. What do health care professionals find difficult in addressing sexual expression with disabled people?
In mental health services, questions about sexual expression are not included in the initial assessment. Main focus is on risk and sexual abuse (historical and present). Needs to be more embedded in front line assessments to give opportunity for people to express any difficulties they are having.
Spinal injuries services have become much more open to discussing sexual expression in the last few years, which is positive to hear.
In Denmark there are guidelines. The biggest obstacle can be the carer/housing facility/organisation as it is difficult to address the service user directly.
Please email Tuppy with any other issues/barriers that you have been faced with
5. Gathering forces – linking allied health professionals and other creative people, including presentation by photographer Ashley Savage
Tuppy has found that many allied health professionals such as art therapists, occupational therapists, don’t address sex with clients.
Tuppy knows lots of creative people and wants to put them together in list as a resource.
- For example: Katie Sarra, an erotic artist, Massage therapists, Ashley who photographs people naked, Tracey who makes wigs for people who have cancer and hair loss, D. who runs a dressing up business, to help them feel more empowered and gain body and sexual self confidence.
Presentation by Ashley
Ashley uses his photography to change the view of what is beautiful, and challenge societal perceptions to help people feel more confident. His work has been exhibited at the Royal Society of Medicine.
Ashley has found people feel empowered even being asked to be photographed, and asked how they want to be photographed. People can choose the type of photos they would like, including erotic photos. Photography is used to improve self esteem in the subject
- Conference idea - different experiences being offered including being painted, being photographed, dressing up as well as talks. Could be at the Brighton and Hove Town Hall.
6. Toolkit update
“The word is out!”
Promotion: Harpal has offered to promote the Toolkit through conferences that she attends in her role as GP. Claire de Than also talks at lots of conferences. Helen has also used parts of the Toolkit and Warrington Disability Partnership do workshops and promote it. ??? who said that?
- Tuppy will produce a leaflet that can be taken to conferences. Please ask Tuppy for leaflets if you are going to any talks, conferences etc.
Updating the site: Susan Quilliam is updating the website – www.sexualrespect.com – on a monthly basis. Tuppy has also been advised by Enhance the UK that it needs subtitles for the film and opportunities for large print.
7. Any Other Business
- Natalie Barclay-Klingle’s Report
I took a proposal to the BMA Junior Member’s Forum regarding the inclusion of sex and disability awareness into the medical school curriculum. This got passed at the meeting and taken to the educational committee who threw it out (citing an ‘already full curriculum’ as reasons for non-inclusion). I am going to be hopefully taking the proposal back to the BMA medical schools committee to see if we can tweak it in some way to get passed through – I would like to say that the reason for failure isn’t the subject matter, more that this is what always happens when we try and get a curriculum inclusion of any shape or form.
At the Annual BMA meeting, I was talking to another Dr who is actively involved in sexual health, and hope to work on some proposals together.
In the meantime, I am trying to tweak my research piece that I did last year, talking to various people (disabled and not) the relationship between sex, disability and the healthcare providers who look after them. I’m wanting to submit this as an opinion piece to the Student BMJ and see if they can publish it.
Although I’ve not got too far with proposals and ideas, I’m building up an inroad of contacts and avenues to explore to hopefully push our agenda within the medical community.
- Amy Parkin is doing an MSc in occupational therapy and sexuality, examining training needs. She was unfortunately unable to attend the meeting but is in active discussion with the College of Occupational Therapists and is writing an article for the British Journal of Occupational Therapy.
- Helen is looking for a life size anatomically correct dolls which show how genitals change when aroused for teaching purposes. She is currently using cloth dolls but these are not ideal. Many of her students do not relate to DVD’s around sex. Please send any suggestions to Helen.
8. Venue, date and focus for next meeting
The next meeting will be on Tuesday 8th April 2014 – venue to be confirmed.