8th October 2010

Report on 11th Meeting



Dr Tuppy Owens (convenor, scribe and presenter) Outsiders

Adam Thomas (chair) – Elfrida Society

Katie Wiltshier (secretary) Occupational therapist

Els Payne (coordinator) – Outsiders

Victoria McKenzie (speaker) – Freelance trainer

Alex Cowan (speaker)

Lorna Couldrick (speaker) – University of Brighton

Eliot Lamb – Independent Living Solutions

Roger Clements – Retired gynaecologist

Sue Newsome – Shakti Tantra

Laura Skorupa – British Polio Fellowship

Sue Nathan – Outsiders

Aldo Picek – Residential home manger

Anastasia Tantrika –  Tantra Teacher

Emma Cogan – OT – Leeds General Infirmary

Rebecca Lowrie – Tantra teacher

Tristana Lauro – Meditation Yoga Teacher

Lorraine Digance – author/researcher

Dominic Webb – trainer

Katie Sarra – art therapist

Sarah Robinson – sex coach

Hardeep Tassell – hypnotist

Johnny Coleman – LC Disability, Petra Boynton, Claire Lewis (Active Assistance), Sue Ronaldson, Alan Taylor – Outsiders, Jon Clugston – Hereward College, Carol Westwood, PST Therapist, Plymouth, Jayne Horton – Warrington Disability Partnership, Steve Shears – Headway, Zoe Grace Cozens – Leapfrog Training, Torie Appleyard, Eirwen – Outsiders, Wwladzia Czuber-Dochan, Greg Sams – Outsiders


The next meeting will be on Friday April 8th from 11am to 4pm

Topics will include:
~ Sex and the Law
~ The Sexual Respect Toolkit – development news
~ Revisiting Aldo’s sexual expression policy

1.Introductions All present introduced themselves and their reasons for attending.

2.Matters arising from the minutes
SHADA membership will remain free for the time being.
It has been agreed that we will not charge for people who do not attend meetings without cancelling before hand.  However all members are requested to let the SHADA Secretary know if they reserve a place at a meeting then cannot attend for any reason.  This helps with organisation on the day and also gives everyone a chance of attending.
The possibility of having an web forum for SHADA members is being looked into.
Monthly newsletter not currently viable.
Topical leaflets to be developed following each SHADA meeting. Once completed these will be displayed on the SHADA website for downloading.

Linda Lewis from the ASBAH helpline was acknowledged by Tuppy and thanked for her hard work especially developing generic policies for the conference and website.  Sadly the ASBAH helpline has lost its funding and Linda has moved on.

All members to let SHADA secretary know if they have reserved a place at a meeting but then cannot attend (thanks to those who already do this)
Webmaster to be contacted about email forum

3.Presentation: Alex Cowan on the effect of MS-related fatigue on her sex life

Alex and her husband were on the Channel 4 Sex Education show – Alex is proud of this as it helped promote disabled people as sexual beings.  She gave a very interesting presentation from her personal experience of fatigue.

What is fatigue? Many different conditions have fatigue as a component.  However ‘fatigue’ is not generally discussed/understood.  There is also very little general information available about fatigue – usually only related to specific conditions.
Fatigue is not the same as feeling tired and wanting to sleep.  It is not necessarily felt after exertion either – can be felt just getting out of bed.
For Alex, fatigue means she can’t think clearly and feels easily overwhelmed.  Needs support with even simple decisions at these times.  The difficulty is you can’t see fatigue so it can be misunderstood.  Alex said she feels useless and worries about losing her mind and there being permanent damage.  It impacts on her physical condition and sense of self.
However fatigue affects each person differently.

Coping – knowing self and body e.g. Alex better in morning and later in evening.  However this can impact on her partner and desire to live a ‘normal’ life.  However fatigue is also unpredictable – even on days when Alex’s timing is good, she eats well and keeps her temperature right, fatigue can still happen.

Effect on sex – mind says yes but body too tired. Can also get tired during sex which is distressing for both Alex and partner.  Cannot keep going to overcome fatigue as makes it worse.  Also feels guilty as sometimes has to let her partner do ‘all the work’ in sex – Alex enjoys sex more when it is collaborative.

View on aids/equipment – Sex swings are good but you have to get one that suits.  Spokz feature a sling as part of their range.   Adaptable swing can make positioning much easier and Alex finds feeling weightless on the swing fantastic.  Hoists and toileting slings can also be used especially if you can get 2 slings so can use one just for sex.

Vibrators can be difficult especially if no use of hands – best to try a few and see what works best for individual needs.  Could adapt a universal cuff but would require someone else to put vibrator into cuff if limited hand function.

Limitations set by MS Society conference – Alex has been invited as key note speaker at the London branch conference in November.  However they are not allowing her to run a workshop on sex…apparently an able-bodied person who is writing a book about the subject is doing that…

4, Presentation: Victoria McKenzie – the effect of ME-related fatigue on her relationships

Victoria gave a personal account of how ME has affect her relationships – themes covered were isolation, disclosure, impact on self image/esteem, issues within relationships, sleep and sex.

Please see attached powerpoint for details of this presentation.

5. Development of the ‘Sexual Respect Toolkit’ – Alex Cowan, Roger Clements and Tuppy Owens

Background: The ‘tool kit’ was originally Alex’s idea to try and overcome the problem of most health care professionals (hcp’s) not talking about sex.  The kit is aimed at all hcp’s and will include learning how to initiate a conversation about sex with patients.  There is a need to get away from ‘preaching to the converted’ such as at the recent SHADA conference and target more widely.

Rationale: The problem is that medical and allied health education tends to mention sex as an ‘add-on’ topic (if at all).  The result is that it is not embedded in practice and can easily be ignored.  Alex has experienced that sex is talked about very little in relation to her disability, and there is very little help around.  Although there are sex therapists, treatment can be costly and again this puts sex as an ‘add-on’.

The product: Information in different forms – written, visual, audiovisual – with simple step by step on how to address sex.  The audiovisual will include hcp’s talking to people about sex who are ‘unsexy’.  The tool kit needs to be pragmatic.

Also highlight dangers of not bringing up the subject and impact on quality of life.  Alex gave an example of a consultant not discussing her preferences before inserting a catheter, resulting in unnecessary fears around sex post-op.

The project will be over 2 years.  Funding potentially from Awards for All.  Tuppy has been speaking to people doing similar projects and gathering information.

A pilot study is planned with people who do not usually discuss sex using the toolkit for 6 months and giving feedback.  In practice workplace policies will also need to change to support use of the toolkit.

Please let Roger/Tuppy/Alex know if you’d like to get involved or have any ideas.

Emma and Lorna agreed to put section on SHADA website about resources for OT’s.

In the afternoon we split into three small groups to discuss topics 6,7 and 8.

6. Reviewing Aldo Picek’s draft policy on ‘Expressing Sexuality’ for various residential homes with a wide range of service users

Aldo had written his draft policy using the template on the SHADA website.  Following the small group discussion he reported he had been given some useful feedback and different perspectives.  Aldo will re-draft the policy and bring to next meeting.

The reason why Aldo needs help is that there are people in his home who have varying levels of capacity to consent. When Linda, Helena and Tuppy wrote the SHADA template policy, it was based on Chaseley, where everyone has full capacity. So Aldo has many obstacles but still has the same aims. Many suggestions were made which Aldo is going to take back to his boss to see how he can move forward. He’s also finding out if there is a budget for this. Dominic came up with some political suggestions, Adam came up with some legal suggestions, and Sue Newsome and Katie Sarra who live in the West Country agreed to come and see for themselves what the problems are. Tuppy assured Aldo that the team around him would work with him providing all the support necessary to achieve his aims.

Please contact Aldo if you’d like to give your views on his policy

7. Developing a leaflet on ‘Sex and Fatigue’

Ideas for this leaflet included the following:
A5 double sided leaflet with limited info and additional A4 ‘fact sheet’ for those who want more detailed info.
Include facts and myths
‘Tired’ is more often used in everyday language, but ‘fatigue’ is different to tiredness.  Need to make this distinction though use of word ‘tired’ could open leaflet up to different user groups.
Looking at sex in a different way –doesn’t have to be focus on intercourse and exertion – there are lots of options such as sensual pleasure, receiving, etc.
List conditions that the leaflet could be useful for e.g. ME, MS, chronic pain, post polio.
The group said it should have an illustration.
The title ‘Too Shagged to Shag?’ was suggested.

Fact sheet to include – how/when to disclose your fatigue difficulties with your partner, importance of pacing/prioritising, use of third person to help with preparation to reduce ‘caring’ role of your lover, practical considerations such as preparing the room well before hand and factoring in time for a rest afterwards, increasing painkillers before love making if necessary.

Tuppy to design leaflet and fact sheet
8. Tool kit development
The following points came out of the small group discussion about the ‘tool kit’.
Need to be wary that health professionals handing over leaflet to disabled people do not pass on their own shame/guilt unconsciously (through non-verbal communication).
How do you deliver workshops that address discomfort of health professionals around discussing sexuality.
Could offer a variety of posters, leaflets and workshops as part of tool kit.  Posters/booklets would be useful to give permission to talk about sex.
A leaflet clarifying the law around use of sex workers and addressing negative attitudes towards s/w’s would be useful.  This could include personal stories from s/w’s – both good and bad.
Would be good to have stories from different points of view – disabled people, sex workers, PA’s, health care professionals.
Tool kit resources need to be available from internet.
Strategic health authorities are keen on ‘inter-professional learning’ projects.  Could have a project based around sexual issues.
Marketing: Could target tool kit at speaker network – Toastmasters, Rotary, WI – to raise awareness.  Also use Assist UK – Disability Living Centres to distribute.
Tool kit to be accessible to all, including health care professionals, social workers, sex workers.  Need to address diversity of gender/sexual preferences/sexual behaviours.
Link between continence and sexual behaviour.
Needs to be translated into ‘easy read’ format – pictures and easy, short sentences.
9. Updates from members
Lorna and Alex – Lorna was invited to an international development workshop.  International development projects usually focus on the negative aspects of sex (unwanted pregnancy, sexual abuse, HIV and AIDS), but this workshop considered the value of refocusing international development around  the positive aspects of sex (see last SH&DA meetings minutes).
Following this, Lorna was asked to write a chapter for  a book based on the workshop information and Alex very kindly agreed to be co-author.  Topics in the chapter include:
-importance of practitioner awareness
– improving practitioner comfort, knowledge and skills

– developing service policies
– the use of sex workers and surrogacy

SHADA, TLC trust and Outsiders are all referenced.
Alex is keen that the language of the book is not too medicalised/jargonised.  Alex also plans to make some sections in the book into a format that is ‘easier to read’.  This is to bring home the point that people with cognitive difficulties are still interested in sex.

Lorna will send a draft of the chapter for the SHADA website.

Lorna also reported that the editor of the International Journal of Therapy and Rehabilitation has requested an article on the legal issues of sex within rehabilitation.  Lorna is meeting Clare De Thane and Belinda Brooks-Gordon to discuss this.

Sue Ronaldson and Michelle Donald have set up a new training company around sex and disability.  Please see their website at www.i-said.co.uk for details.

Tuppy did a talk in Sheffield about sex and disability.  She told them that sex therapists need to bring themselves out of the dark ages…
Tuppy also said that Susan Quilliam – who won an Erotic Award for Publication of the Year – is very willing to help Outsiders which is great news.

10. Venue, date and focus for next meeting

The next meeting will be on Friday April 8th from 11am to 4pm
Topics will include:
~ Sex and the Law
~ Sexual Expression Toolkit – development news
~ Revisiting Aldo’s sexual expression policy