5th November 2008


Report on 7th Meeting

Minutes

ATTENDANCE LIST (with email addresses):

Dr Tuppy Owens (convenor and scribe)

 

Katie Wiltshier (secretary) Occupational therapist/Outsiders

 

Lorna Couldrick Brighton University

 

Agnes Boes – Terrence Higgins Trust

 

Elizabeth Molligan – Leonard Cheshire Disability

 

Dr David Goldmeier – St Mary’s Hospital Sexual Health Clinic

 

Helena Barrow – Chaseley Trust -

 

Kate Wilkinson – Chaseley Trust

 

Torie Appleyard – Psychosexual Therapist

 

Eleni Stephani – Outsiders Helpline

 

Lynn Hearton – Fpa Helpline

 

Jayne Horton – Warrington Disability Partnership

 

Adam Thomas – Elfrida Society

 

Munni Dodeja – Reading Borough Council

 

Graham Jowett – Treloar College

 

Alan Taylor – Outsiders

 

George O’Neill – Derbyshire PCT

 

Dr Belinda Brooks-Gordon – University of London

 

Els Payne – Outsiders V-Group

 

Rachael Wyartt – Brook Helpline

 

Subhajit Sengupta – Oxford Brookes University

 

Julia Pealman – Youthnet

 

Ian Watters

 

 

APOLOGIES: Dr Petra Boynton (researcher), Steve Shears (Headway), Debbee Arthur (Respond), Linda Lewis (ASBAH), Esther Day (South Essex NHS), Mary Clegg (BASE), Doug Ross, Tulloch Kempe (Outsiders), Heather Stevenson (Occupational therapist), Ariana Chevalier (Escort and sex coach), Sue Nathan (Outsiders), Mary Foster (Sense), Saera Mushtaq (Leonard Cheshire), Doug Ross (Leonard Cheshire), Katy Evans (Leonard Cheshire), Simon Parritt (Psychosexual therapist)

 

 

ACTION 

- Belinda to try and recruit RNIB member for SHADA

- All to keep an eye on developments re. legislation to criminalise sex work

- Tuppy to complete SHADA database

- Send any suggestions for changes to mission statement to Tulloch - tulloch@tull62.fsnet.co.uk

- Working group to report back to March meeting on progress made with conference

- Send any ideas, etc about conference to working group

 

 

The next meeting will be on Thursday March 19th from 11am to 3.30pm (networking till 4pm) at London venue TBC

 

Theme will be Spina Bifida and other progressive neurological conditions.

 

Topics will include:

~ Presentation from Linda Lewis, Association of Spina Bifida and Hydrocephalus

~ Update on SHADA conference

~

 

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

 

  1. ‘In Touch’ Project – Leonard Cheshire

Elizabeth Molligan from the Innovative Projects team at Leonard Cheshire outlined progress with the ‘In Touch’ research project.  The project is for 3 years and is looking at information available on sex for young disabled adults (18-24 year olds).  The Warrington Disability Partnership is a key partner in this project and has been involved in the pilot scheme.  For more information, please see attached powerpoint presentation and/or contact saera.mushtaq@lcdisability.org

 

  1. Matters arising from the minutes

Tulloch had not managed to contact anyone at RNIB.  Belinda will go in to RNIB office and try to get new SHADA representative as Wayne Smith has left.  Other possibilities for information on vision impairment and sex are the disability officer at Birbeck University who is blind.  Kate and Helena have a partially-sighted counsellor at Chaseley.  Katie is also in contact with someone who may be able to help.

Handout on legal position re. sex workers on hold as Home Office currently trying to get sex work banned.  Police Fed and NAPO have both sent strong responses to Home Office about this potential legislation.  Situation at present not looking good – campaign to criminalise sex work is gathering pace.  We all need to keep tabs on government websites – it is not yet clear which Bill it will be under.

Tuppy has had no answer from Alison Lapper re. being on letter to Tops

- Katy Evans compiling SHADA database and will pass on info to Tuppy before she leaves LC

- Dave Thompson is happy to advise on including questions about sex during assessments – dave.thompson@5bp.nhs.uk

- Adam reported that ‘Summer of Love’ event was very successful – 300 people with learning difficulties attended.  It included inclusive speed dating (Adam working in conjunction with Stars in the Sky to help everyone meet).

- Fpa learning disability campaign also successful – all info can be seen viawww.fpa.org.uk/news/campaigns/current%5Fcampaigns/detail.cfm?contentid=972

- Disabled erotic artist project folded as didn’t get funding

 

ACTION 

- Belinda to try and recruit RNIB member for SHADA

- All to keep an eye on developments re. legislation to criminalise sex work

- Tuppy to complete SHADA database

 

 

  1. Developing a vision and mission statement for SHADA

 

The following have been suggested:

 

Aim

SHADA aims to support the sexual health of disabled people and to challenge negative asexualizing stereotypes.

 

Vision

SHADA envisages a more inclusive society where every disabled person’s unique sexual identity is given due respectful, non-judgemental recognition and acceptance enabling its diverse expression and celebration.

 

Mission

SHADA’s mission is to support and facilitate the sex and relationship needs of all people with disabilities*, campaigning to removed the stigma attached.

 

*As defined in the Disability Discrimination Act 2005

 

 

 

  1. Outsiders Update

Next year is 30th anniversary of Outsiders.  Various events being discussed.  For full update see attached file.

 

 

6.      Presentation from Dr Petra Boynton via Tuppy

The Tops Letter Group sent their draft to some relevant academics, to ask if they would put their names to it. Dr Petra Boynton, who works in research in health and social care both nationally and internationally, replied to say that she has tried such projects in the past, and the letters haven’t even reached their destinations. Petra had hoped to come and speak to us about her recommendations which offer solutions rather than expecting other agencies to respond to a letter. However she was unable to attend so passed on her thoughts via Tuppy.

 

Petra’s recommendation include:

 

Ø      Put a short survey up on the Outsiders website for health professionals to fill in, to give us more information about the training that is currently available, or lack of. Petra can do this but we need ideas on what questions should be in the survey.

 

Ø      Compile a set of training packs for health professionals, aimed at the various types of disability. These will be downloadable from the Outsiders website. This work will be done by Outsiders and will require funding.

 

Ideas about what should be included in such packs were information specific to disabilities and/or signposting and useful resources.  Warrington Disability Partnership have a service level agreement in place with their local PCT and also leaflets from different organisation.  Jayne Horton and WDP are presently collating information on disability agencies (covering both physical and learning disabilities).

There are various people around the country offering resources/running groups for people with learning difficulties around sex – need to find a way of collaborating and sharing ideas in this area.

 

Ø      Build up a team of disabled experts to offer peer-to-peer counselling, both online and in sessions at conferences and when invited.

 

Ø      Hold a one-day training day / conference in London for educators and practitioners in health care, offering CPD points, as part of the Outsiders 30th Anniversary.

It was agreed that a SHADA conference will be held on November 12th, 2009 – details below.

 

SHADA Conference:

 

Discussion around the conference came up with the following ideas:

 

Theme: SHADA’s Sex and Disability Conference

 

Main target audience: health, social work and education

 

Aims of conference: raise awareness of the issue of sex and disability (not realistic to send people away knowing how to do it in practice)

Would help people come together who have an interest in this area for networking, sharing ideas and information.

 

Structure of conference: Key note speakers and series of workshops covering issues discussed.  Ideas include developing a policy for your service.

 

Marketing: SHADA to have its own website – Alan Taylor has offered to set this up; also need to contact publishing companies and potential exhibitors

 

Location: Somewhere 10 minutes walk from Euston and Kings Cross. Possibly Friends Meeting House near Euston, Institute of Family Therapy, Birbeck University

 

Cost: Graded scale depending on organisation, from £1-500 per day; need to look for someone to underwrite conference.

Also put together a conference pack with resources to sell to people who can’t come to the conference.

 

Working group for project: Dr Petra Boynton, Graham Jowett, Dr Tuppy Owens, Lorna Couldrick, Helena Barrow; Agnes Boes, 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.

 

Long term aim: create peer to peer counselling.

 

 

Other themes/information that came out of discussion around conference as follows:

-         Images in literature are always non-disabled, even with learning difficulties.  However a photographer in California – David Steinberg -  spent 2 years taking photos of disabled people which are now on the TLC website (www.tlc-trust.org.uk).

 

-         The Highland Learning Disabilities and Relationships Group (HLDRG), based in the Highlands of Scotland (NHS Highlands have developed training programs and have training materials – these are worth looking at to see how to get the message across to professionals, families, etc.  Everyone involved in working with people with learning difficulties had to attend discussions – lots of different organisations involved.  A policy and booklet for people with LD was then produced in accessible language.

See internet for more info on policies, etc – includes heterosexual and LGB issues.  Email Agnes if you want documents.

 

ACTION

-         Working group to report back to March meeting on progress made with conference

-         Send any ideas, etc about conference to working group

 

 

7.      Presentation: Lorna Coudrick – Strengths and Limitations of the PLISSIT model: a new model proposed

Lorna presented her ideas for a new sexual health model as an alternative to PLISSIT that could be more suitable for use by health professionals in addressing issues around sex with disabled clients.

In her research, Lorna found that healthcare professionals were generally ignoring or sidestepping issues regarding sexuality.  They would only give ‘permission’ (first stage of the PLISSIT model) if they thought it was their role.  She also found there was a general lack of awareness that sex may be of interest to disabled people, as well as confusion about whose ‘role’ it was to address these issues.

 

Lorna’s new model includes the following stages:

1.      Recognition of the service user as a sexual being

2.      Provision of sensitive, permission giving strategies

3.      Exploration of the problem/concern

4.      Address issues that fit within the teams expertise and boundaries

5.      Referral on where necessary

 

For further information about this model, see Lorna’s paper – ‘The problem with PLISSIT: A proposal for a new sexual health model of practice for use by disability teams.’  Lorna would welcome feedback from SHADA members about her proposed model - couldrick@btinternet.com

 

 

8.      Presentation: Agnes Boes – Setting up a Sexual Health Service for People with Physical Disabilities in the Highlands of Scotland

Agnes is a Health Promotion Specialist working for Terrence Higgins Trust, based in Inverness.  THT offers broader sexual health services than just HIV.

Agnes is planning to set up a sexual health service for people with physical disabilities, however there is no specific funding at THT for this.  However local branches of THT have the freedom to develop services for the local area.  So, a project is being set up that is partly peer-led and partly supported by the organisation.  This includes disabled people meeting to discuss their sexual needs.

 

A draft poster has also been developed to promote the services.  Different designs were shown to the meeting for feedback. Agnes will also ask disabled people themselves what they would like to see on posters.

 

Tuppy and Agnes have agreed to exchange training – Tuppy will run a sex and disability training for THT staff, and in return Agnes can offer sexual health information to SHADA.

 

Agnes is also starting a social group in May 2009 – she is trying to get funding for this from Co-op.  She has also started an online social group for people to contact each other as people are very spread out geographically.  Now members of the group have arranged to meet up in person, though distance is a big issue.

 

Issues raised in discussion:

 

-         The boundary between ‘sex’ and not ‘sex’ is not always clear e.g. touch can transcend into something sexual.  People assume that sex means sexual intercourse – need a wider definition otherwise causes distress for some e.g. man without feelings in penis feeling that he is not ‘sexual’.

-         Finances are a barrier to people accessing sex workers

-         People need education to feel less embarrassed about discussing sex

-         David will email article from Journal of Sexual Medicine by Beverley Whipple.  Whipple has shown that a paraplegic woman who can’t have orgasms through clitoral stimulation can have orgasms through stimulation of her vagina via a nerve pathway other than the spine.

 

-         St Mary’s GU Clinic  - anyone can refer themselves for advice – the clinic staff includes medics, nurses and psychologists.  David said that part of the work is motivational psychology to get people to see why safe sex might be in their interests.

GU clinic can also offer help for people who want to stop their sex drive – would offer counselling first and discuss options including medication available from specialist clinics.  Anyone interested can email Dr David Goldmeier directly -david.goldmeier@imperial.nhs.uk

 

-         Learning difficulties:

-         There is information on an adapted program for LD sex offenders from the Home Office (ask Belinda for more info)

-         SOTSEC-ID is a project about men with LD who sexually offend – a range of interventions covered.

-         Elfrida Society has good info on sex issues and LD, as has Tizzard Centre.

-         In LD area, clients sometimes given medication without discussion of side effects – people with LD need to givenoptions

 

Something worth remembering….Patient power is paramount! If patients want a service, it has to be provided.

 

 

9. Venue, date and focus for next meeting

 

The next meeting will be on Thursday March 19th from 11am to 3.30pm (networking till 4pm) at London venue TBC

Theme will be Spina Bifida and other progressive neurological conditions.

 

Topics will include:

~ Presentation from Linda Lewis, Association of Spina Bifida and Hydrocephalus

~ Update on SHADA conference

 

Mary Clegg is unfortunately unable to attend to speak about sex toys for disabled people, but is interested in speaking and/or exhibiting at our conference.