19th March 2009


Report on 8th Meeting

 

Minutes

ATTENDANCE LIST

Dr Tuppy Owens (convenor and scribe) Outsiders

Katie Wiltshier (secretary) Occupational therapist

Helena Barrow (chair) Chaseley Trust

Jackie Redding – THT Lighthouse (presenter)

Linda Lewis – ASBAH (presenter)

Sam Hancock – KIDS (presenter)

Kate Wilkinson – Chaseley Trust

Torie Appleyard – Psychosexual Therapist

Eleni Stephani – Outsiders

Jayne Horton – Warrington Disability Partnership

Adam Thomas – Elfrida Society

Graham Jowett – Treloar College

George O’Neill – Derbyshire PCT

Els Payne – Outsiders

Ian Watters

Sue Ronaldson – Cancer nurse and PST student

Johnny Coleman – Leonard Cheshire Disability

Victoria McKenzie – Freelance trainer

Jan Lilley – Powys People First

Paula Thompson – ASBAH

Eliot Lamb – Independent Living Solutions

Sue Nathan – Outsiders

Sheena Kidd – Christchurch Court

Roger Clements – Retired gynaecologist

Steve Shears – Headway

 

Apologies: David Goldmeier (St Mary’s clinic), Sue Newsome (Shakti Tantra), Lynn Hearton (Fpa),  Kulsum Jaffer (gynaecologist), Greg Sams (Outsiders), Mary Clegg (Beecourse), Marianne Scobie (Leonard Cheshire), Rachel Wyartt (Brook), Alan Taylor (Outsiders), Katie Sarra (Erotic artist), Lorna Couldrick (University of Brighton), Kate Horbury (Elfrida Rathbone Camden)

 

ACTION:

-Please email information to Tuppy for the database if you have not already done so – name, organisation (if applicable) and your role, why you think the work of SHADA is important and contact details (optional).

-  Email any suggestions for changes to vision and mission statment to Tuppy –

Tuppy to look into potential ‘recession funding’ for SHADA training.

- Look at www.shada.org.uk and pass on any suggestions to Tuppy for what to include, etc.

Conference committee to continue organising content of day.  Anyone interested in joining committee let Tuppy know

- Anyone with ideas for a sex positive policy template, send them to conference committee.

 

The next meeting will be in October

 

Topics will include:

~ Neurological disorders, spinal injury and its effect on sexual function – Helena Barrow and Kate Wilkinson

~ Sex toys for disabled people – Mary Clegg from Beecourse and the British Association of Sex Educators
Introductions All present introduced themselves and their reasons for attending.

 

  1. Matters arising from the minutes

 

 - Legislation to criminalise sex work ~ this is still being pushed ahead, however there are positive things happening also.

 

- SHADA database ~ Only 5 out of 100 members have sent their details to Tuppy for the database.  Tuppy would like information to be put onto the new SHADA website (www.shada.org.uk) so people can see who are members of SHADA and how to get in touch.  Information re. those present was collected during the meeting.

 

- Vision and mission statement ~ these are now on the new website, but need to be improved.  As Tulloch is no longer working for Outsiders, please email any suggestions for changes to these to Tuppy – tuppyo@gmail.com

 

- Sex work in Holland ~ Helena reported that Lorna had visited Holland recently.  In Holland (and part of Belgium), if someone is disabled or injured and can’t masturbate, the state will pay for 10 sessions per year for a sex worker to do this.  Steve Shears also went to the Cognitive Rehabilitation for Brain Injury conference in October 2008, held in Holland.  He got no response when he challenged conference delegates about sex being part of rehabilitation.  However the head of OT education in Holland did tell him they will start to include sex on the curriculum.  Helena had a similar experience about lack of interest in sex at the European rehabilitation conference.

 

- RNIB ~ Belinda was not at the meeting to report on making contacts in the RNIB.  However Tuppy has found a performance group – Extant – who are all blind or vision impaired.  They are going around the country doing burlesque shows and running workshops.  This will be a good inroad to working with blind people.

 

- Funding for training ~ there is a recession fund for charities for training and collaboration – Tuppy will look into this re. SHADA.

 

ACTION 

- Please email information to Tuppy for the database if you have not already done so – name, organisation (if applicable) and your role, why you think the work of SHADA is important and contact details (optional).

-  Email any suggestions for changes to vision and mission statement to Tuppy –

- Tuppy to look into potential ‘recession funding’ for SHADA training.

 

 

3. Presentation: Linda Lewis – ASBAH – Spina bifida and hydrocephalus, its effect on sexual function and the role of ASBAH.

 

Linda is the ‘Association for Spina Bifida and Hydrocephalus’ (ASBAH) Helpline and Information Service Manager.  She joined SHADA to find out more about services available for signposting, policies, etc. regarding sex, as the helpline was getting enquiries about sexual difficulties.

 

Linda’s powerpoint presentation is attached to these minutes.  Topics covered include information about ASBAH, spina bifida and hydrocephalus – signs and symptoms, effects on sexual function, treatments, social issues.

 

An important point that was made is that latex allergies are common with this condition and can be severe.  Therefore use of latex-free condoms is essential for this client group, as many do not know they have a latex allergy.

 

Calls to the helpline include the following issues:

-         self esteem

-         how to talk to a sexual partner about bowel and bladder problems

-         practicalities of having sex

-         callers are often referred to the Sex and Disability Helpline (run by Tuppy) as ASBAH medical advisors do not like medicalising sex.

 

Advice for people with these conditions, particularly those with little or no feelings below the waist:

The body has lots of sensations so it is important to explore and find out what you like.

Stimulation of the prostate in men can achieve orgasm.

Sex toys can be helpful, also equipment to aid comfort.

 

The ‘Intimate Rider’ enables someone with backpain or a disability to have sexual intercourse.  For more information seewww.spokz.co.uk – the Rider has had great reviews from disabled people and is sold by a man who himself is disabled.  A free CD Rom is available from the website to show how it works.  It costs £575. Linda has managed to secure a 10% discount for ASBAH service users with Spokz.

 

Tuppy said there is a doctor in Holland doing an operation to restore feeling to one half of the genitals, but this is not presently available in the UK.

 

ASBAH was the first agency in the UK to invite a sex worker to their AGM.  They are keen to treat service users holistically and address sexual issues.  Presently Linda is unable to advise on using sex workers, but would like this to be included in a policy to protect helpline workers.

 

Helpline staff come from a range of backgrounds.  Most staff are open and liberal and have no problems discussing sex and relationships.  Staff who are reluctant to discuss these issues are empowered to do so, especially area advisors who do home visits where it is not always easy to speak to service users alone.  Linda is keen to get sex and relationships on the ‘open agenda’ so everyone knows its OK to talk about it.  This is backed up by research and helpline statistics that provide evidence that people do want to discuss sex and relationships.

 

For more information on ASBAH see www.asbah.org.

 

 

4, Presentation: Sam Hancock – KIDS – Innovative board game for sex education.

 

Sam is a trained youth worker and works for the Young People’s Inclusion Network at KIDS, which aims to empower disabled young people (13-25 yo).  It is a 3 year project.

Sam was employed to look at sex and relationships – she covers 5 regions – London, Bristol, West Midlands, Yorks and Humber and the South East.

Initially Sam met with young people in all these areas and discussed sex and relationship issues.  These were often associated with self esteem, self expression, confidence and making friends.  She found there was a wide spread of experiences and knowledge, not necessarily linked to age or disability.

 

As a result of these discussions, Sam wanted to devise a game to help young people learn about sex and relationships in a fun and positive way.  She had found that current games on the market had a negative view of sex.

 

The game was developed in conjunction with Sam’s co-workers and in consultation with the young people (yp) she works with.  The yp chose to call the game ‘Relation-tips’.  Sam also used a focus group of young people to give feedback on the game.  Their suggestions were then incorporated into the game.

 

The game itself consists of a tactile board (for those with vision difficulties), 2 types of large, tactile dice and playing pieces that are big, colourful and easy to hold.  There are 3 sets of questions cards which are large cards with simple language.  They can be used as part of the game or just as discussion tools by themselves.  The 3 sets of cards: ‘your view’ which are scenario-based around sex and relationships – these promote discussion and peer education; ‘fact’ cards are based around sex and relationship topics and have right/wrong answers, but don’t have to be answered; ‘general’ questions such as what is your favourite colour, are designed to promote discussion and are non-threatening.

 

The aim of the game is fun and promoting discussion – if someone doesn’t know an answer, they do not lose points.  It takes about 2 hours for 5-6 people to play the game with one dice (quicker with 2 dice).

 

Sam is hoping to get funding to make the game and sell it commercially.  Estimated cost of manufacturing a small batch (to see what interest there is) is around £2000.  Specialist publishers may be interested, could also make a DVD to promote the game and show how it is played.

 

Other options for the game:

Could include questions specific to different physical disabilities

Board in Braille

Could put in blank cards for people to add questions relevant to them

 

If anyone would like to know more, or has ideas on who might fund this innovative game, please email Sam onsam.hancock@kids.org.uk

 

 

5. Terrence Higgins Trust – presentation by Jackie Redding

 

THT was started in 1982 after the death of Terry Higgins.  It is the biggest HIV charity in Europe and the largest condom provider!

The have 37 centres in the UK, 5 in London.

 

Services:

Direct service delivery – promotion and health improvement, training, information, helpline, work on the streets

Clinical services – Jackie is in charge of development in this area – HIV and other STI testing.  THT offer a non-clinical environment and are open evenings and weekends.  Mobile units are also sent out into the community to do testing.  HIV tests ready in 10 minutes.

 

Care offered is socially integrated, working with people with HIV, also their families and friends.  Support offered is practical e.g. housing, immigration issues, as well as emotional e.g. counselling.

 

HIV is now seen as a long term chronic condition.  Peer support and empowerment are important part of managing this.  THT also work with employers to improve understanding, etc.

 

There is now more work around sexual health as well as HIV.  THT targets those most at risk including those with HIV, lgbt, black and minority groups, sex workers and young people.

 

HIV is not seen as a disability in itself, though some people have disabilities on top of HIV e.g. haemophiliacs.

 

THT also works with staff working in residential/care settings.  Particular concerns arise if a resident is known to be HIV positive and they are having a sexual relationship in a care home – should the staff report this?  THT advise that staff do not have to report this.

 

Referring to THT:

Referrals can be via workers, self referral or via the helpline – 0845 1221200.  Alternatively email via the THT website (www.tht.org.uk), call or come into any local THT centre.  THT will also do outreach at GP surgeries, hospitals or at home.

 

Advocacy is also provided, supporting both HIV positive clients and partners, professionals, workers re. criminalisation issues.

 

 

6. Update on SHADA conference

 

Venue:  Roger Clements and George O’Neill had a meeting with the sex committee at the Royal Society of Medicine (RSM) who have agreed to host the SHADA conference on Friday November 13th, 2009.  They reported that the committee were very positive about the proposal however were unsure about including live performances.

 

Anyone can join the RSM who has an interest in medicine – they have a very good medical library and have open meetings in the evening that anyone can go along to.  See their website - http://www.roysocmed.ac.uk - for more information.

 

NB There are limited numbers of spaces for people using wheelchairs in the RSM conference room, and wheelchair users should book in as soon as possible, and state whether they can transfer to other seating or not. We will be providing stewards to help with chairs.

 

Program: Tuppy has come up with a program for the conference.  Tuppy suggested that the conference programme should demonstrate that is it actually damaging to disabled people if their sex and relationship problems are not included in consideration of their general needs.

 

The draft program is as follows – small rooms not available for workshops so all presentations will be in the main hall.

 

 

 

CHAIRS – Tom Shakespeare and Caroline Bowditch

History of training in sex and disability – Dave Thompson, MBE and Simon Parritt

NEW policies (possibly several policies put forward)

Lorna’s new model (alternative to PLISSIT)

Coffee

 

Short presentations about different disabilities (by service users) – to include neurological disorders, cancer, spinal injury, kidney failure, hip replacement, CP, sensory disabilities, spina bifida, stroke, learning disability, speech impairment and LGBTI people

LUNCH

 

Disability, the Law and Regulatory Bodies

Training needs – examples of good practice

SHADA training – what’s out there?

Tea

 

Performances:

Sue (tantric sex worker) and Dominic (has quadriplegia) – “ What they didn’t teach me at the Spinal Unit”

Solitaire (striptease dancer) and Jimmy (deaf/blind) “Vibes”

Caroline Bowditch – disabled dancer ”The Long and the Short of It”

 

Discussion around draft program:

 

Disability and the Law (and regulatory bodies): Roger Clements may have a solicitor who will come and speak re. sex workers.  Roger said that nothing has been tried in court yet e.g. calling a sex worker on behalf of a service user.  Until something has been tried in court, the issue won’t move on.

 

Training needs: sex education is often just given at a basic level.

However there are examples of good practice – SHIELD on the Isle of Wight has a good reputation for sex education re. learning disability.  Sheena Kidd will email details of Teresa’s training.  What we need is an examples of a mixed school that deals with sex and physical disability education.

 

Sex toys and equipment: Linda suggested the disabled man selling the ‘Intimate Rider’ may come and present.

Mary Clegg from Beecourse could be exhibitor.  If anyone knows anyone else who might like to be exhibitor, encourage them to contact conference committee.

 

Performances: People who don’t want to see performances could leave after tea, or performances could be recorded and shown via DVD.

 

Exhibition: Outsiders have commissioned Katie Sarra, who does erotic paintings of disabled people, and Ashley, who photographs disabled people.  Their work will be displayed next to the conference room.

 

Marketing: The RSM will advertise the SHADA conference in their journal.  The RSM also said they will take 50% of conference profits, though will provide venue for free.

 

Committee: Current conference committee is Dr Tuppy Owens, Roger Clements, Dr Petra Boynton, Graham Jowett, Lorna Couldrick, Helena Barrow; George O’Neill and Jayne Horton will be part of group mainly via email; Dr David Goldmeier in advisory capacity – he has experience in running conferences.

 

If anyone would like to join the committee, please email Tuppy at tuppyo@gmail.com

 

7. SHADA website

Tuppy has started the website – everyone was happy with the new logo.

ACTION                                                                                                                                                                                          Please seewww.shada.org.uk and pass on any suggestions to Tuppy for what to include, etc.

8. Structure of SHADA

Discussed whether to formalise the structure of SHADA.  It was agreed that formalisation of roles may be useful so they can be put on the website and people know who to contact.

We still need a press and publicity officer – could possibly link with Outsiders publicity person.  It was suggested that advertising on the website for a student interested in this area could be the way forwards.

Outsiders trustees are keen to keep links between Outsiders and SHADA, and would like a couple of SHADA members to become Outsiders trustees.  Anyone interested please contact Tuppy.

It was also agreed that there would still be no charge for SHADA membership at present, though this may come in the future.

 

9. Creating an ‘ideal’ sex positive policy template for different professions

It was agreed that a baseline policy template for all areas would be useful, then different subsections for different areas.  The baseline would start with the words “We believe that sexuality is a basic human right”.

The following areas were identified for needing sex positive policies.  Names in brackets next to each area relate to people who can advise on specific needs.

Residential and nursing homes (Helena)                                                                                                                                        Schools and Colleges (Graham J)                                                                                                                                              Disability agencies (Linda L)                                                                                                                                                                 OT, physio and other health professions, including NHS Trusts (Lorna C)                                                                                    Helplines (Linda L and Tuppy O)
Spinal Injury Units – Royal Orthopaedic Hospital, Stanmore (Tuppy will contact them)
Social Services (Highlands)   Learning difficulties and care review (Highlands, Fpa)                                                  GP’s (Royal College of GPs)
Workplaces/HR (?)

There will always be an element of risk in human relationships.  Sex workers could be called ‘professional enablers’ in policies.

ACTION                                                                                                                                                                                                                                                                                                                                                                                                                   Anyone with ideas on policy, please send them to conference committee.

 

10. Any other business

Katie passed on the following message from Dr David Goldmeier, from St Mary’s Hospital: disabled people can refer to his clinic by emailing him at david.goldmeier@imperial.nhs.uk

 

 

 

 

11. Venue, date and focus for next meeting

 

The next meeting will be in October

 

Topics will include:

~ Neurological disorders, spinal injury and its effect on sexual function – Helena Barrow and Kate Wilkinson

~ Sex toys for disabled people – Mary Clegg from Beecourse and the British Association of Sex Educators