12th October 2009


Report on 9th Meeting

Minutes


ATTENDANCE LIST
Dr Tuppy Owens (convenor, scribe and presenter) Outsiders
KatieWiltshier (secretary and presenter) Occupational therapist
Linda Lewis – ASBAH (chair)
Lorna Couldrick – University of Brighton (presenter)
KateWilkinson – Chaseley Trust (presenter)
Mary Clegg – BASE and Beecourse (presenter)
Sue Newsome – Shakti Tantra (presenter)
Claire Lewis – Active Assistance (presenter)
Torie Appleyard – Psychosexual Therapist
Els Payne – Outsiders
Sue Ronaldson – Cancer nurse and psychosexual therapist
Victoria McKenzie – Freelance trainer
Eliot Lamb – Independent Living Solutions
Roger Clements – Retired gynaecologist
Alistair Bradford – MoD Headley Court
1shada
Jon Clugston – Hereward College
Michelle Donald – Trainer and psychosexual therapist
Mary Foster – Sense
Apologies: Greg Sams (Outsiders), Alan Taylor (Outsiders), TraceyWood (Leonard
Cheshire), Johnny Coleman (Leonard Cheshire), Eleni Stephani (Outsiders), Dr Petra
Boynton (researcher), Steph Palin (Relate), Jayne Horton (Warrington Disability
Partnership), Zak Hussain (Leonard Cheshire), Martin Jelfs (Tantra teacher), Steve
Shears (Headway), Chris Jones (Oxfordshire Learning Disability NHS Trust), Helena
Barrow (Outsiders), Mandi Peers (VJ), Jackie Redding (THT), Adam Thomas (Elfrida
Society), ClaireWilliams (Macmillan), Damian Houston (community radio presenter)
Many thanks to Jackie Redding and THT for hosting both this meeting and our
next one in March 2010.
ACTION:
- All members please look at www.shada.org.uk and pass on any ideas you
have to Tuppy.
- Sam Hancock to get in touch with Lover’s Guide – they may be able to
offer money.
- Please send Tuppy information about any relevent projects, training days
or conferences you are running so they can be put on the SHADA website
- SHADA to link with BASE including mutual website links
- Linda and Tuppy to put policy guideline frameworks together
- SHADA structiure and possible membership fee to be discussed at March
2010 meeting
The next meeting will be on Monday March 8th
from 11am to 3.30pm (networking
till 4pm) at Ian McKellan Hall, THT LighthouseWest London, 111 Lancaster Road,
LondonW11 1QT
Topics will include:
~ Presentation by Zoe Grace Cozens – trainer for people with disabilities
~ Review of SHADA conference and future of SHADA
~ Reflection on the policy process at Ministry of Defence
~ The truth about sex work and trafficking – statistics
~ Report from Tuppy on the Venus fair in Berlin
2shada
1. Introductions All present introduced themselves and their reasons for
attending.
2. Matters arising from the minutes
- Tuppy reported that she had found response rate from SHADA members to her
email requests were low. She assumes this is because everyone in SHADA is
busy and only has time to attend meetings.
- All members please look at www.shada.org.uk and pass on any ideas you have
to Tuppy.
- Sam Hancock to get in touch with Lover’s Guide – they may be able to offer
finance for her game.
ACTION
- All members please look at www.shada.org.uk and pass on any ideas you
have to Tuppy.
- Sam Hancock to get in touch with Lover’s Guide – they may be able to
offer money.

3. Presentation: KateWilkinson from Chaseley Trust – Neurological Conditions and
their effect on sexual function
Kate is psychosocial manager at Chaseley Trust – a residential nursing home for
people with severe disabilities. Kate has a clinical nursing background and has been
working for the last 18 years with severely disabled people. Her main interest is
multiple sclerosis.
Kate described how multiple sclerosis, spinal injury, motor neurone disease and
Parkinson’s disease can all affect both relationships and sexual function.
Bladder and bowel problems can affect relationships as can the unpredictable nature
of neurological disorders. Short term memory problems and speech difficulties can
also put a strain on relationships. MND particularly affects communication very
quickly. Pain can also affect both sexual desire and relationships.
For those with deteriorating conditions, dealing with loss is a constant concern. Loss
of function can be unpredictable with certain conditions, also potential loss of children
and family life for those moving into residential care.
The issue of capacity needs to be addressed for people with cognitive problems.
Some conditions such as MS and Parkinsons can lead to sexual disinhibition which
can make the disinhibited person vulnerable. Kate gave an example of a woman with
MS becoming very sexually overt which resulted in her being banned from the MS
Society in her local area…
It is worth noting that sometimes Parkinsons medication can have the side effect of
sexual disinhibition.
For staff at Chaseley, it is difficult to know the ‘pre-illness’ personality of their service
users as this information is not given.
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For people with spinal injuries, the effect on sexual function and relationships is
varied. One of the main concerns for people with injuries at T6 and above is
autonomic dysreflexia. This is an exaggerated response to stimuli, which results in
increased blood pressure and can be life threatening. It does not occur often but
people with spinal injuries are given information about the signs and what to do about
it. Chaseley also teach their carers to recognize the signs.
Any stimulus below the level of the injury can trigger a.d. Skin integrity can also
impact on sexual activity. However it is still possible for some people with spinal
injuries to have children.
Policies at Chaseley
Helena Barrow, RGN and registered manager of Chaseley is very proactive in relation
to enabling residents at Chaseley to have an active sex life if they choose to.
One of Helena’s ideas was to write information about sex into the policy without
making it too explicit. The person paying for the care would then sign to say they
agreed with the policy, which would then cover the care workers for However this
caused difficulties with the Care Quality Commission. Care workers were also unsure
of where they stand regarding enabling sex. This highlights the importance of having
a clear policy so workers will feel protected.
On a practical level, Sue Newsome – tantric sex worker – described working with
someone with Parkinson’s Disease and also someone with tetraplegia. She said that
she focuses on sensuality rather than performance for the man with PD.
‘Performance’may not be possible due to side effects of medication. Her client with
tetraplegia reports that he needs lots of time to relax into the sensations – too much
too soon can be overstimulating. Sue works with all the senses.
4, Presentation: Mary Clegg – British Association of Sex Educators and sex toys
for disabled people.
Mary gave a very interesting and thought-provoking presentation on BASE and
considerations around sex toys that can be used by disabled people.
This included sex toys on the market that are suitable, adaptations that can be made to
existing products. Points for consideration when choosing/adapting a sex toy for
people with differing levels of physical and cognitive function were also covered.
Please see attached powerpoint for details of this presentation.
5. Report on ‘Inner Nature’ development day – Tuppy Owens, KatieWiltshier, Sue
Newsome, Claire Lewis
‘Inner Nature’was a development day for people with spinal injuries and multiple
sclerosis. Were were somewhat disappointed that nobody with Spina Bifida attended,
but it was generally recognised that people with Spina Bifida are difficult to motivate.
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The idea came from a young Outsiders member, Shah Rashid who has a spinal injury
who has found that peer support was very helpful in learning about sex and
relationships.
‘Inner Nature’was facilitated by Tuppy Owens from Outsiders and the Sex and
Disability Helpline, Sue Newsome from Shakti Tantra, Katie Sarra – erotic artist and
tantric sex worker and KatieWiltshier – occupational therapist and trainee
psychosexual therapist.
Participants included disabled people as well as carers and health professionals. All
were open minded in terms of what they wanted from the day. The day included a
mixture of presentations, demonstrations and discussions. Feedback from the day was
positive and it is hoped that similar days will be run in the future. Ideas include
development days in different parts of the UK and also focusing on different
disabilities.
A full report will soon be available on the SHADA website.
6. Report from Lorna Couldrick on visit to Holland to find out what sexual services
available.
Lorna’s visit to Holland was inspired by her research into whether there was an issue
for health care professionals around discussing sex. During her research, Lorna
discovered an interest from disabled clients in having a surrogate partner, so she went
to Holland to see what was available.
In Holland there are several organisations based around sex work, sex and disability:
- Fleks Zorg (www.flekszorg.nl or info@flekszorg.nl) has staff called ‘sex
caretakers’ who will visit clients. Their services can be paid for by health
insurance.
- RNG is more like BASRT in the UK – mainly concerned with sexual
dysfunction in this country, with some disability advice.
- Lorna chose to visit De Shildpad – an organisation founded by a disabled
person (no details available for website).
De Shildpad: Fees for services are from clients and also from health insurance. They
cover the Netherlands and Belgium and provide access to sexologists (psychosexual
therapists), administration and financial support (such as help to get funding to access
services).
There are 4 women and 2 men working in the service – they see themselves as social
workers who sometimes have sex, rather than ‘sex workers’. There is particular
emphasis on intimacy – seen as ‘emotional befriending’.
Surrogate roles fitted into two categories – compensation (regular ongoing contact)
and developmental (coaching which did not encourage dependency on the surrogate).
5shada
The focus of the surrogate is supporting the client to get into the social environment,
building up relationships, getting comfortable with intimacy then sexual contact (if it
gets this far).
Staff are trained in interpersonal skills (including communication), activities of daily
living (equipment, hoists, etc) also different conditions and their effect on sexual
function.
The service is very well known and easy to access.
Advantages to using this service compared to using an independent sex worker as
follows:
- Safe sex guaranteed
-Workers know about disability
-Workers are independent and pay tax (and therefore not coerced)
In the UK, surrogacy services usually involve the client, a psychosexual therapist and
a sex worker. However there are some sex workers in the UK who work
independently as ‘sex coaches’.
It seems there is more ‘normalisation’ of attitudes towards sex (including use of sex
workers) in Holland. Since 1995, there has been a seal of quality for anything in the
commercial sex trade.
Tuppy commented that it seems easier for people to accept sex workers being used by
disabled people than to accept disabled people finding partners. She also felt the dis-
advantage in the way they work is that the boundaries are blurred (between therapy
and sex).
Lorna’s report from her visit will be on SHADA website soon.
7. Finalising the SHADA conference
Ideas for promoting the conference were discussed.
8. Future of SHADA
Tuppy expressed that initially it seemed everyone was proactive in moving SHADA
forwards, but now people seem busy and have less energy to put into SHADA.
Tuppy tried to get a database of SHADA members and their work but response rate
has been low. Instead of this, the SHADA website will include info on relevant pro-
jects that members are engaged in.
It was agreed that SHADA and BASE would have links to each others’websites and
support each other’s work.
6shada
The International Society of Sexual Medicine – ISSM – has a forum where someone
can ask a question and it gets sent out to all members via their list serve. Any
question can be posted, however the question may be moderated by the secretary of
the ISSM. This forum can be used to indirectly promote your organisation through
letting people know it exists.
Policies: Linda and Tuppy agreed to create policy guidelines to act as a framework for
different agencies to use.
The issue of whether SHADA membership should be free or not was discussed – it
was agreed that this would be raised again in March 2010 meeting after the SHADA
conference.
Els agreed to join SHADA committee as ‘SHADA coordinator’ – Els will support
Tuppy and Katie in organising the website, meetings etc.
ACTION
- Please send Tuppy information about any relevant projects, training
days or conferences you are running so they can be put on the SHADA
website
- SHADA to link with BASE including mutual website links
- Linda and Tuppy to put policy guidelines frameworks together
- SHADAmembership fee to be discussed at March 2010 meeting
9. Any other business
- Tuppy is going to Berlin to the Venus fair – she will report back at the next meeting.
- Tuppy reported on an Outsiders workshop for men on how to get a girlfriend, run by
‘dating coach’ Richard La Ruina from www.PUA.com. One of the questions he sug-
gested asking was ‘What do you like doing most?”, enthuse about what she says,
identifying all the possible emotional benefits? And proceed from there. Tuppy said
the workshop was very inspiring.
- Mary said the new SENSE policy was being agreed – she will try to include sex
work into the policy.
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- Discussion on exact number of sex workers trafficked – very small number (less
than 5%) – true statistics to be brought to next meeting to help SHADA members be
clear about the extent of trafficking. In the meantime, members may like to read Sex
at the Margins – Migration, Labour, Markets and the Rescue Industry by Laura María
Agustín (Zed Books).
10. Venue, date and focus for next meeting
The next meeting will be on Monday March 8th
from 11am to 3.30pm (networking
till 4pm) at Ian McKellan Hall, THT LighthouseWest London, 111 Lancaster Road,
LondonW11 1QT
Topics will include:
~ Presentation by Zoe Grace Cozens – trainer for people with disabilities
~ Review of SHADA conference and future of SHADA
~ Reflection on the policy process at Ministry of Defence
~ The truth about sex work and trafficking – statistics
~ Report from Tuppy on the Venus fair in Berlin