Report on 4th Meeting
* Dr. Tuppy Owens Outsiders Sex and Disability Helpline (convenor and scribe),
* Lorna Couldrick lecturer in health profession work, Brighton University (chair),
* Katie Wiltshier Occupational therapy student – Salford University (secretary),
* Sue Nathan Outsiders Membership Secretary,
* Eleni Stephani Outsiders Social Secretary,
* Avril Jones Response Helpine Line Manager at Scope,
* Adam Thomas Access to Health Assistant Manager – The Elfrida Society (presenter),
* Jo Holloway Access to Health Manager – The Elfrida Society (presenter),
* Julia Pearlman Youthnet journalist (www.thesite.org),
* Helena Barrow The Chaseley Trust Registered Manager (presenter),
* Victoria McKenzie Freelance trainer,
* Lynn Hearton (fpa) – Helpline Manager (Sexual Health Direct),
* Su Curtis Worcestershire Mental Health Partnership NHS Trust – Counsellor/Home Advisor,
* Alan Richens Worcestershire Mental Health Partnership, NHS Trust – Clinical Psychologist,
* Debbee Arthur Respond helpline manager (presenter),
* William Donovan Respond and Respond Action Group,
* Tamanna Choudhury Respond and Respond Action Group (presenter),
* Sylvia Brookstein Respond and Respond Action Group (presenter).
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* Wayne Chapman (RNIB),
* Christine Thomas (RNIB),
* Jo Cumming (Arthritis Care),
* Ilaria Primoni (Sexual Dysfunction Association),
* Shital Shah (counsellor),
* Zak Hussain (Leonard Cheshire),
* Marianne Scobie (Leonard Cheshire),
* Nicki Ward,
* Clare Fanstone (FPA),
* Susan Moore (Elfrida Society),
* Alan Taylor (Outsiders),
* Simone van Luytman (Stars in the Sky).
Thursday November 22nd, London. Title: Sexual Freedom of Disabled People and the Law. If anyone is in contact with someone specialising in this area who may like to present at our next meeting, please let Katie and/or Tuppy know.
All present introduced themselves and their reasons for attending.
Matters Arising From The Minutes
* RNIB have not managed to get sex and relationships mentioned on Daily Living section of their website as yet.
* Wayne has not had a chance to develop i2i workshops as yet.
* Simon has not yet managed to get SHADA mentioned through his Disability Now column.
* Tuppy found that there are no books available for blind people to learn about sex. She wants to initiate the writing of a book about sex and blindness, and is hoping that Peter White will advise.
* Tuppy sent the law document to Lorna and Helena that they found helpful, and have managed to find more information about use of sex workers.
* Tuppy has been writing a grant application to make Outsiders more sustainable. She has also written to famous people including Peter White but has had no response yet.
* Lorna will contact Wayne and Christine at RNIB to see if they need any help with actions decided at last meeting.
* Katie will try and approach Peter White at the next College of Occupational Therapists Conference in June.
* Tuppy to continue to try to launch book for blind people.
PRESENTATION Helena Barrow, Registered Manager of the Chaseley Trust in Eastbourne
The Chaseley Trust is a nursing home for 55 disabled people aged 18 years and upwards, with an average age of 40. Residents present mainly with neurological problems and a few have learning difficulties. No-one has been assessed under the new Mental Capacity Act as not having capacity, therefore all residents are deemed to have capacity until such time as assessed otherwise. Chaseley has a day centre as well as a bar and pool table. They also have their own pool team.
Helena has been working hard to enable her residents to have a full life including finding ways to allow them to have a sex life. However, this endeavour has been difficult due to both legal and practical problems.
Chaseley used to be a home for ex-servicemen, run by the Ministry of Defence. At this time, sex was enabled for the residents including provision of sex workers and condoms. However, once civilians were brought in, policies were tightened around this.
Helena spoke about the practical difficulties of finding a profiling double bed suitable for a married couple in the home. A solution was eventually found by joining two profiling beds together with further adaptations. This situation highlights the wider issue of the lack of education regarding enabling sexual expression for disabled people in this country.
Currently how each resident expresses themselves sexually is addressed by how they look or whether they are able to have children, etc. This is the same assessment carried out across health professions and somewhat misses the wider issues of sexual expression, often due to either confusion and/or embarrassment. Chaseley are looking into having a leaflet with the admission pack addressing sex and expression but cannot take this forward until there is something concrete to write in it i.e. we can do this for you but not that.
Helen’s main concern is how to enable the residents to have an active sex life if they so choose, while staying within the law. The problems with this include grey areas within the law regarding what is legal and what is not, as well as the fact that residents may change their minds as to what is acceptable and what is not. This highlights the need to protect both staff and residents. Discussion with solicitors regarding how Chaseley could be protected if something happens, have highlighted that at present there is no answer as no case like this has ever been tried in court.
There may also be grey areas within the law around use of sex workers. Although Helena has access to sex workers, she cannot call them on behalf of a resident as this would possibly be illegal. However, some residents are not able to speak on the phone or visit a sex worker so this presents a problem.
Policies have been developed from those at the Disability Association regarding enabling. These state that you can only enable a sexual act, you cannot be involved. Staff at Chaseley are supported regarding boundaries. Staff also work in pairs to cover care workers.
On a positive note, Helena’s Psychosocial Care Manager has been asked to find out whether two local lap/pole dancing clubs have disabled access. If they do not, Helena and team will pursue the opportunity for these dancers to come to Chaseley. This was a request from one of the residents during his 6-monthly Multi-disciplinary Review meeting.
Discussions from this presentation covered the following:
* Health care professionals need support and guidelines from groups such as SHADA.
* Personal values of health care professionals and support staff need to be addressed, as these can have a big impact on the sex lives of disabled people.
* Using experienced sex workers to enable disabled people to have sex rather than mixing it up with other care work would be a better solution. Sex workers are comfortable being around strangers in sexual situation and are less likely to be abusive, inhibited or intrusive. Such sex workers would need knowledge of working with people with disabilities. The best scenario would be someone who has trained as a health care professional such as an RGN who was also a sex worker.
* The TV programme series “Helen House” showed Nick Wallis’s care worker making the phone call to the sex worker although she was not allowed to visit him at his home.
* We need more voices to be positive about sex and disability – how can SHADA support people not to look away? We need to open people’s eyes to say that it is OK to ask if they are sexually frustrated, and ask about their sexual desires. Need to remind people that sex is OK and NATURAL.
* Tuppy has a website for healthcare professionals and disabled people to access sex workers – www.TLC-trust.org.uk.
* Possibility for Outsiders party at Chaseley, as well as sensuality playshop and belly dance classes.
* Regarding mental capacity, there is a detailed Code of Practice around the Mental Capacity Act which will help to clarify how to determine someone’s level of capacity. Also need to look at the Sexual Offences Act 2005 to be clear about how it impacts on enabling sex for disabled people.
* Victoria to make policies available regarding mental capacity/consent from her work in NYC to those people who have been trained.
* Tuppy will put a list on this website of how healthcare professionals can assess if a sex worker is OK to use with a disabled client when calling them for the first time.
* Tuppy will put Helena in touch with John Blandford, a criminal lawyer specialising in sex work.
* Tuppy will pass on the number of a stripper who is experienced at working with people with disabilities to Helena.
* Tuppy to send everyone a copy of Davina McColll’s sex education in schools program.
PRESENTATION: Jo Holloway and Adam Thomas ~ Access to Health Project, The Elfrida Society
The Access to Health Project covers the following areas:
* Health Advocacy: support for people with learning difficulties to access health services (short or long term).
* Health Promotion: a men’s group and women’s group are run at a local day centre.
* Accessible material e.g. medication, conditions. A Women’s Health Pack with information on sex-related matters including body awareness has recently been published as the outcome of a two-year project involving service user input. This was funded by a grant. It is available for £5 from www.elfrida.com. This pack provides valuable information that carers are often unwilling to discuss.
* Training to healthcare professionals regarding communicating with people with learning difficulties.
The Access to Health project is based in Islington and funded by social services and the Primary Care Trust.
Sex and relationship education is offered both on a 1:1 basis for specific problems and also in group settings. People with learning difficulties encounter unique problems regarding sex and relationships including social isolation and limited opportunities for sexual expression, as well as sexual expression not being encouraged. Jo and Adam reported a better response from carers recently but there are still negative attitudes. As a result of social isolation, people with learning disabilities sometimes learn about life through soap operas on TV which results in views such as everyone who is married then will have an extra-marital affair. To combat this, Adam and Jo work with service users to identify relationships that can be supportive and those that are not. Education is also given regarding reasonable rates for services such as sex workers and lap dancers to guard against financial abuse from service providers.
Adam reported on the men’s group he ran at the local day centre. The group consisted of 8 men, aged 30-65 years old, who were mostly older men. The group included 4 men who were non-verbal. The group covered body awareness, sexual health and reproduction as well as practical skills such as putting condoms on bananas.
Jo reported on women’s groups and a men’s group that she had been involved with. Some of the women’s groups were based on sex and relationships, others covered women’s health issues including cervical and breast screening. The men’s group had been for men with mild learning difficulties and covered information about both female and male sexual health and reproduction. Many commented that this was the first time anyone had covered this information.
Jo and Adam also talked about Stars in the Sky, a dating agency set up for people with learning disabilities in Hackney that is very successful. The service is run by two women who themselves have learning difficulties. Simone van Luytman from this organisation had unfortunately been unable to attend this meeting. Stars in the Sky organise trips out for people to go out in groups, as well as offering supported dates. They also run women’s nights and men’s nights. They also go out to different events such as speed dating and the Wild Bunch (www.wildbunchclubs.com).
Adam voiced concern about the Care Workers Offences and Sexual Offences Act which make it illegal for care workers to have sexual relationships with clients. Adam has written to the Home Office about the lack of exemption for people with learning difficulties in this Act, but as yet has had no response.
Discussion from this presentation regarding:
* The use of depo-provera contraceptive injections (which stop the development of eggs) and the lack of choice/information that women are given.
* Whether being learning disabled makes you exempt from abuse, if starting a relationship with someone learning disabled in your care. It is impossible to write guidelines in this area for every eventuality.
* The issues of sexual abuse and working with people who are vulnerable, and the need for education about keeping safe.
* Alan Richens provided the NICE guidelines on “Long-Acting Reversible Contraception”. This can be accessed through www.nice.org.uk.
* This document covers “Contraception for Special Groups”. Some of the wording is a follows:
o Women with learning and/or physical disability should be supported in making their own decisions about contraception.
o When a woman with a learning disability is unable to understand and take responsibility for decisions about contraception, carers and other involved parties should meet to address issues around the woman’s contraceptive need and to establish a care plan.
All interested SHADA members to review this document and make comment on whether they agree with it or not. If the consensus is that these guidelines should be changed, we need to do something about it.
PRESENTATION: Debbee Arthur, Tamanna Choudhury, Sylvia Brookstein and William Donovan ~ Respond and the Respond Action Group
Respond is a nationwide helpline based in Euston for people with learning difficulties. They also provide counselling for people with learning disabilities regarding abuse and trauma. The service is holisitic, serving both victims and offenders in order to break the cycle of abuse.
The Respond Action Group meets monthly and looks at issues such as bullying and accessible web pages. The group also lobbies Parliament, does outreach work and publishes articles.
William reported on his visit to the Houses of Parliament where he spoke about abuse and what should be done. He stated that people with learning difficulties should be listened to rather than ignored or told to keep quiet as has been the case in the past.
Outreach work has included:
* Members of the group ran a workshop on abuse during a conference on domestic violence.
* Performing plays on the street, on buses and outside the police station (they were not allowed in) to raise awareness of abuse.
* Attending a police conference as part of a consultative group on hate crime and CPS disability and equality work.
* Attended conferences around the UK.
* Work in residential homes.
* Working with Choice Support – adult protection. This was to see if staff training had filtered down to the service users by finding out if service users knew the process of complaints regarding adult protection.
* An article was published in the Community Care Magazine (last week in February 2007) about someone with Downs Syndrome in the workplace. The article was about a young male with learning difficulties who wants to live independently, and the difficulties he faced.
Personal experiences shared in support group:
* These include financial abuse and people with low support needs being ignored by service providers when they want to live independently.
Advice from the Action Group regarding cases of abuse:
* Phone/tell someone.
* Shout and tell them to stop.
* Challenge why they are doing it.
* Walk away.
* Know your rights – abuse isn’t normal.
William, Tamanna and Sylvia then told of their personal experiences around relationships.
Discussion following this presentation included:
* Resources available regarding sex and relationships for people with learning disabilities. The Elfrida Society is willing to train health care professionals. Tuppy asked if they knew how to help autistic people who flap hands when they are sexually excited and was directed to the UK learning disabilities – a health network run by the foundation for people with learning difficulties – www.idhealthnetwork.org.uk. Messages can be posted on this website that will be answered via email.
* Sweet Talk is a group run by Outsiders and Danda for neurodiverse people to learn how to start relationships.
* The main area for development is good quality information for people with learning difficulties. There also need to be services to reach people who don’t want to join a group.
* We need to educate grant providers that disabled people want better sex lives.
* The NHS Operating Framework for 2007/08 (can be access via www.dh.gov.uk) includes a section on learning disabilities, stating that commissions needs to look at how people with learning difficulties are serviced in the community.
* The Sexual Health and Wellbeing Learning Network has published a review of resources for people with learning disabilities – it can be accessed from www.healthscotland.com/sexualhealth or email SHWLN@health.scot.nhs.uk. There is also information available from www.fairadvice.org.uk – leaflets presently include sex, AIDS and giving up smoking.
* Also many other resources available including DVDs made by Enable of training in sex education on www.Outsiders.org.uk/pld.
Any Other Business
Lorna reported on the MS Trust conference. She ran a workshop with Helena on sex and MS, covering three scenarios. Health care professionals included OT’s, RGN’s and MS nurses, who all found it difficult to think how they would deal with these scenarios. Dr. Fred Foley, a leading authority on sexual issues in Multiple Sclerosis attended, and praised, the workshop.
The MS Trust is running a sexual issues chatroom on their website on Tuesday 24th April 10 a.m. -7 p.m. Visitwww.mstrust.org.uk, Phone: 01462 476700. Email: email@example.com. This chatroom celebrates the new book “Sexuality and Intimacy for Women with MS by Nicki Ward.
Lorna had heard via Dominic Davies of an art exhibition (currently in Australia) by Belinda Mason-Lovering. It can be viewed on line at www.intimate-encounters.com.au/start.html. (Click on ‘exhibition’ then ‘sexuality and disability’). The images are a collaboration between the participant and the artist to challenge existing views on disability and sexuality.
Lorna and Katie represented SHADA at the Jane Wadsworth Sexual Function Clinic brainstorming meeting. We were invited by Dr. David Goldmeier, clinical lead at Jane Wadsworth. It was an interesting day and our presentation was well received, provoking discussion about the lack of accessibility to services for people with disabilities.
There is a Canadian film called “Want” produced by a disabled lesbian that is worth watching, and is nominated for an Erotic Award as is “Equal Opportunities” by Mathilde Madden about a female devotee of disabled men (Virgin Books). Outsiders also had nominated www.fitnessunarmed.com from an armless model and SWAP by a deaf singer. Lee Kemp, star of the Crippendales (also nominated), recently on channel 4 will be performing at the showcase (www.erotic-awards.co.uk). Mouthing off, a tetraplegic man’s praise of kissing from an Irish production company www.venom.ie and Amora London the sexual education show at the Trocadero Picadilly Circus.
The Sexual Freedom Conference is on April 21st – 2 p.m. – 5.30 p.m., Toynbee Hall – all welcome. See www.Outsiders.org.uk for details.
The British Association of Sex and Relationship Therapists Conference is on May 12th and 13th at the University of Warwick, Coventry (details from www.basrt.org.uk).
Youthnet are doing a survey on young people’s views about sex – details of this have been circulated to all members. If you work with young people, please pass the details on to them, or email Fiona.firstname.lastname@example.org for more details. They have had 22 responses so far.
Helena kindly offered the Chaseley Trust in Eastbourne as a venue for the next summer meeting.
Avril from Scope was thanked for organising a room for us, especially at such short notice.