16th April 2008


Report on 6th Meeting

 

 Minutes

ATTENDANCE LIST (with email addresses):

Dr Tuppy Owens (convenor and scribe) Outsiders

 

Katie Wiltshier (secretary)Occupational therapist/Outsiders

 

Lorna Couldrick (chair) Brighton University

 

Steve Shears (speaker) Headway

 

Victoria McKenzie Freelance trainer

 

Debbee Arthur Respond

 

Greg Sams – Outsiders trustee

 

Tracey Wood – Leonard Cheshire

 

Linda Lewis  - Association for Spina Bifida and Hydrocephalus

 

Carol Milne – Independent Living Solutions

 

Torie Appleyard – Psychosexual Therapist

 

Saera Mushtaq – Leonard Cheshire

 

Eleni Stephani – Outsiders Helpline

 

Tulloch Kempe – Outsiders Director

 

Lynn Hearton – fpa Helpline

 

Claire Fanstone – fpa

 

Jo Holloway – Elfrida Society

 

Jayne Horton – Warrington Disability Partnership

 

Naomi Cheetham – Warrington Disability Partnership

 

Darryl Chapman – Berkshire NHS

 

Martin Jelfs – Psychotherapist

 

Shital Shah – Arthritis Care

 

Adam Thomas – Elfrida Society

 

Katy Evans – Leonard Cheshire Disability

 

 

APOLOGIES: Dave Thompson (5 Boroughs Partnership), Julia Pearlman (Youthnet), Sally Davis (Oxford Brookes University), Penny Tomlinson (Flintshire NHS), Heather Stevenson (Occupational therapist), Tom Presland (Leonard Cheshire), Graham Jowett (Treloar College), Ariana Chevalier (Escort and sex coach), George O’Neil (Derbyshire NHS), Sue Nathan (Outsiders), Mary Foster (Sense), Helena Barrow (Chaseley Trust), Kate Wilkinson (Chaseley Trust)

 

ACTION 

-     Tulloch to try and make contact with RNIB

-     Jo Holloway to review NICE guidelines on depo contraception and bring comments to next meeting

-     Tuppy to compile handout on legal position re. calling sex workers and ask John Blandford to endorse it

-     Working group to write letter to target tops.  First three letters (same letter to different organizations) to be sent by the end of June

-     Tuppy to ask Alison Lapper to have her name on our letterhead

-    Working group to come up with 2 options for SHADA vision and mission statement, then circulate to wider SHADA membership for comment.

-    Debbee to coordinate compilation of SHADA members’ details

-    Jane Horton to ask Dave Thompson if he is willing to advise re. including questions re. sex in assessment tools

-    Anyone with ideas for Summer of Love event to pass them on to Jo Holloway

-     Ideas for national Fpa campaign for clients with learning disabilities to contact Claire Fanstone

-    Anyone who knows an disabled erotic artist to put them in contact with Tuppy

 

 

The next meeting will be on  Wednesday October 8th from 11am to 3.30pm(networking till 4pm) at Leonard Cheshire Disabiliy,
66 Lambeth Road, Vauxhall SW8 1RL

Topics will include:

~ Future organisation of SHADA

~ Update on Leonard Cheshire’s sexual health project

~ Using the PLISSIT model for addressing clients’ sexual problems

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

 

 

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

 

  1. Matters arising from the minutes

Lorna emailed Wayne at RNIB twice but got no response.  Tuppy also has had no luck with getting any help from anyone at the RNIB in writing a book on blindness and sex.  Tulloch said Outsiders may try and contact someone at RNIB.

- Katie tried to contact Peter White via BBC Radio 4 website but no response.

Victoria was unable to get permission for summary of policy to be put onto Outsiders website.  This is because anyone who uses the policy needs to have completed a 2 day training course to use it properly.

- Lorna has a copy of Davina McColl’s program, with interesting information about sex education in the Netherlands. Tuppy will make a copy for anyone who would like one.

-  No-one had reviewed NICE guidelines on depo contraception (www.nice.org.uk) since the last meeting.  Jo Holloway volunteered to review these guidelines and bring her comments to the next meeting.

Tom Presland and Tuppy are liaising about sending Leonard Cheshire policy re. sex to Tuppy

- Tuppy will compile a short hand-out regarding the legal position re. calling sex workers and ask John Blandford to endorse it.

ACTION 

-         Tulloch to try and make contact with RNIB

-         Jo Holloway to review NICE guidelines on depo contraception and bring comments to next meeting

-         Tuppy to compile handout as above

 

 

  1. Targeting the tops of organizations – progress so far and the way forwards

 

Working group of 7 people has been developed for this project – Lorna Couldrick (coordinator) Ariana Chevalier, Tuppy Owens, Dave Thompson, Simon Parritt, Tulloch Kemp and Helena Barrow.  The aim of this group is to develop a letter to target tops of organizations.

 

The background to this project came from Lorna’s research with health care professionals.  Lorna found that even health care professionals who were committed to addressing sex-related issues with their clients did not believe that the Trust would support them.  This indicated that even if people working with clients are trained in dealing with sexual issues, these workers need backing from their managers/employers to put this into practice.

 

So, the aim of the letter is to encourage Trusts, managers and other bodies such as the Health Professions Council to support employees in addressing sex-related issues with clients.  This may include putting policies in place.

 

However Lorna reported that several issues had been raised such who is the letter from and what SHADA membership consists.

The following points were noted:

-         We need to be clear about what SHADA is before this letter can be completed.  For example develop a vision and mission statement (see next item).

-         It would be good to have names of well known people in the world of disability (especially people with disabilities such as Alison Lapper) on the letterhead.

-         Need to target individuals within organizations who can make personal contact with ‘tops’.

-         We have been advised to start with ‘easy’ organizations then target more difficult ones later.

 

Action: Working group to write letter to target tops.

First three letters (same letter to different organizations) to be sent by the end of June.

Tuppy to ask Alison Lapper to have her name on the letterhead.

Anyone wanting to join this group please email Lorna – couldrick@btinternet.com

 

 

  1. Developing a vision and mission statement for SHADA

 

It was agreed that SHADA is pronounced like ‘sharder’ rather than ‘shayda’.

 

It was also agreed that it important to keep SHADA democratic, but efficient.  In light of this, a small working group was formed to develop a draft vision and mission statement.  This draft would then be circulated to the whole membership before a final decision is made.

 

This working group presently consists of the following people: Tulloch Kemp (coordinator), Shital Shah, Greg Sams, Tuppy Owens, Lorna Couldrick, Martin Jelfs.  If anyone would like to join this group, please contact Tulloch directly (tulloch@tull62.fsnet.co.uk)

 

During a discussion of the ‘purpose’ of SHADA, the following ideas were put forward:

-         Raising awareness and opening dialogues about sex and disability

-         Sharing best practice

-         Challenge the status quo

-         Being a face for change

-         Think tank, support for change (internal and external)

-         Need to normalize the concept of disabled people having sex

-         Work responsibly

-         Force for change

-         Respect for choice – informed choice

-         Improve confidence, skills and tools (training)

-         Define holistic ideas of sex, rather than sex as a subset of medicine

-         Focus on forming relationships, also developing sexual awareness

-         Directory of ‘sexperts’

-         Deal with barriers e.g. care workers not wanting to bring up subject of sex with clients, also legal barriers

-         Making sex as a subject safer and more accessible – how to include in an assessment, signposting, confidence of worker in discussing sex with clients

-         Human rights – everyone has a right to a sex life (should they want one) – same rights as able bodied people

 

Examples of current good practice:

Some workplaces dealing with brain injury have a sexual wellbeing policy in place, and all staff must have an awareness of this area.

The MoD at Headley Court has a specialist dealing with sexual issues for ex-servicemen/women injured in war.

 

 

Ideas for SHADA’s mission:

All disabled people have their sexual needs addressed.

 

What is SHADA in business to do?

-enabling/facilitating disabled people to have the chance to explore their sexuality

 

It was suggested that the word ‘sex’ should not be included in the vision statement as vision should be wider and more utopian than mission statement.

 

Words suggested that might reflect SHADA’s  were as follows: inclusive, sensuality, pleasure, solo sex, relationships, appreciating and enjoying your disabled body and sexual health.

 

Action: Working group to come up with 2 options for SHADA vision and mission statement, then circulate to wider SHADA membership for comment.

Anyone who wants to join this group to email Tulloch - tulloch@tull62.fsnet.co.uk

 

 

  1. Presentation: Steve Shears from ‘Headway’ ~ dealing with sexual disinhibition after brain injury

 

Steve is training manager for Headway, a charity working with people who have acquired brain injury (ABI).  He gave a very interesting presentation which included:

-         the impact of traumatic brain injury

-         possible reasons for sexual disinhibition after ABI

-         radio 5 live program of a couple where the woman had experienced sexual disinhibition after ABI

 

If anyone would a copy of Steve’s presentation, or would like ask him questions, share views etc, he can be contacted ontraining.manager@headway.org.uk

For anyone how would like further training in this area, Steve runs courses – details on www.headway.org.uk

 

 

  1. Any other business

 

Ø      SHADA contact sheet/member details: it was suggested that it would be useful to compile a list of ‘who’s who’ in SHADA.  The idea is that each member of SHADA will write a few lines about their work, area of expertise, contact number and email so that members can network more effectively.  Debbee Arthur will coordinate this.

 

Ø      Including questions about sex on assessment forms: Tuppy has received a request from the Shropshire enablement team for help in re-writing their assessment form to include sex, and wanted to know what questions to put on the form.

-         the learning disability health network is a good source of information for this.

-         Dave Thompson delivers training to doctors and consultants, working with them to identify what questions to ask re. sex in assessments, and where to place such questions.  Jane Horton will ask Dave if he is willing to offer help to wider audience.

-         If anyone has any assessment documents that include sex questions, please let Tuppy know.

 

Ø      LD club night with sexuality theme: Jo Holloway is organizing a club night with a sexuality theme and is looking for disabled burlesque dancers – please forward any ideas/contacts to Jo – jo@elfrida.com  It will be on June 13th and will be called the ‘Summer of Love’. Jo will forward information to SHADA members once she has more information.

 

Ø      Sexual health work, focusing on people with learning disabilitiesFpa are running a national campaign around opportunities for people with learning difficulties to form relationships.  If anyone has any thoughts re. publicity, past experiences, ideas, etc , please contact Claire Fanstone - clairef@fpa.org.uk

More information about the national campaign can be found at www.fpa.org.uk

 

Ø      Night of the Senses – Some deaf/blind people will be coming this year.  It will be held on September 12th – more info at www.nightofthesesenses.com

 

Ø      Outsiders 30th anniversary next year – there will be an Exhibition of Erotic Art by disabled people (including social, physical and learning disabilities) to celebrate this, in conjunction with Stars in the Sky.  It is hoped that the launch will be in February 2009.  A vote for the title of the exhibition was taken between ‘ My Funny Valentine’ and ‘Eye of the Beholder’.  ‘Eye of the Beholder’ got the majority vote.

If anyone knows of any disabled erotic artists, please let Tuppy know – tuppyo@gmail.com

 

Ø      Future ideas for SHADA topics/presentations

The following ideas were put forwards:

- Future organisation of SHADA – committee, membership fees, looking for funding

-         the PLISSIT model

-         Mary Clegg – sex toys and equipment for disabled people

-         ASBAH

-         MS Trust

 

 

  1. Venue, date and focus for next meeting

 

The next meeting will be on  Wednesday October 8th from 11am to 3.30pm (networking till 4pm) at Leonard Cheshire, 66 Lambeth Road, Vauxhall SW8 1RL.

Topics will include:

~ Future organisation of SHADA

~ Using the PLISSIT model for addressing clients’ sexual problems

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