S exual H ealth I nnovative E ducation for L earning D isabilities

1. SHIELD Sexual Health Innovative Education for Learning Disabilities The Key to Assessing inequalities and meeting future needs. Teresa Day Health Promotion Specialist Sexual Health and Learning Disabilities

2. History and Circumstances • I was working as a Health Promotion Specialist in Sexual Health Education. • There was increase in referrals for sexually inappropriate behaviours, sexual health issues, adult and child protection issues. • I was 30 hours a week and my remit covered children and adults, PHSE SRE, health promotion including group and one to one interventions as appropriate on assessment. • I was not able to meet the increasing needs at that time and felt that it was vital to try and identify what actions needed to be taken. Denial of sexuality has a dehumanising effect.

3. I looked at what evidence was available, resources we had, expertise and experience of other professionals. • A service was needed to meet the needs of people with learning disabilities but we did not have funding and only limited resources available. This lead me to create a programme that we could use not only to meet the current needs but also to identify future needs and inequalities using limited funding, building on current expertise and resources available . • I developed SHIELD and its associatedguidelines as a response to the sexual health needs of people with learning disabilities • Rationale • Increasing service demands to manage sexual health/relationship issues, brought to the forefront a vital initiative to assess needs and inequalities in statutory and non-statutory services. H O W

4. Initial information from Community LD Team • Sexual health policy for their team 1993. • People with learning disabilities were not being effectively supported due the lack of sexual health knowledge. • A policy review to support staff in promoting sexual health requested. • My Response: not to be prescriptive policy as it would be better to identify needs and inequalities in local services, gather feedback and evidence from people with learning disabilities, staff, carers and parents coping in the real everyday world. • To work with Clinical Governance to undertake survey as quickly as possible.

5. Sexual Health and Learning Disabilities ReportProduced with Clinical Governance Unit March 2005 • Key Points from Summary • 72.0% staff wanted more information on current sexual health and relationship issues • Where it was highlighted that unnecessary restrictions were placed on appropriate sexual behaviour, 53.8% of these came from the private sector • 59.8% felt that service users were at risk in the areas of relationships and sexual health. • 61.4% felt that there was a general lack of recognition for clients’ sexuality and relationship needs.

6. Key points from Summary • 68.3% were interested in attending sex and relationships workshops for those working with people with learning difficulties. • 55.6% felt that there would be no problem in attending this training due to work commitments. • 66.7% felt that attendance would be made easier if the training were free. • 60.8% felt that sexual health relationship problems in this area were not adequately highlighted. • In relevant cases, problems were discussed at staff meetings 22.0% of the time.

7. Action from this: • 10 Shield Facilitators trained from across many disciplines include: • Senior Community Learning Disability Nurse • Learning Disability Assistant • Local F.E. College Section Leader for Learning Disabilities • Community Gay & Bi-sexual Mens Outreach Worker • 2 Community Learning Disability Support Workers • Special School Nurse • Special School PHSE (Personal health social education) Teacher • Health Promotion Specialist • Senior Support Worker (voluntary sector) • 16 + Team Lead • Connexions Personal Advisor

8. Funding then made available from LDDF (Learning Disability Development fund) and used to: • Employ Community Learning Disability Liaison Worker (sexual health) • Integrate and support SHIELD Facilitators • SHIELD Training : 42 SHIELD Links across the area being supported by our team. • Write and develop –Sexually Inappropriate Behaviour Training Programme- BodyWorks SIB • Develop specific integrated pathways of care for sexual health service • Current Training Programmes: • SHIELD • BodyWorks SIB • Sex, Learning Disabilities and the Law • SHIELD Workshops- Learning Disability Awareness Raising • Because Your Gorgeous – Peer Training (sexual health) for People with Learning Disabilities

9. Community Learning Disability Nurse Team Community Learning Disability Social Care Team Clinical Governance Integrated Sexual Health Service Learning Disability Partnership Board People First Breast Unit Local Adult Services Special Schools and Respite Centres SENCOs Childrens’ Disability Team Connexions Healthy Schools BILD Non –statutory services Safeguarding Adults & Childrens Team Crossing boundaries, disciplines and developing partnerships to create a service

10. 2004 Accessing Support 2008 • Before SHIELD: • People with learning disabilities did not know about sexual health services, who to ask or where to go. Sexual issues often not managed in clients best interests. Poor awareness of safer sex. • No Condom Distribution Scheme • Staff: Unsure of where to go or who to ask: Felt unsafe in supporting people in relationships due to lack of policy and protocols in their workplaces. • No formal guidelines apart from adult protection. • No Core basic sexual health training programmes Friendship and relationship opportunities were very limited- transport difficult- limited care worker support to attend the few social events in existence. T H E N

11. THE SHIELD TEAM • 42 SHIELD Links across the area working in residential and day care services. They have basic sexual health training /more competent to support clients basic sex and relationship issues. • 8 SHIELD Facilitators supporting and supervising more complex issues/running workshops for residents etc. • 25 Learning Disability,Sex and the Law Trained – 15 in West Berks -10 IOW • More people with learning disabilities are aware of safer sex/services and how to get help/support • Sexual health policy for learning disabilities Updated, reviewed to be launched in Spring 2008 N O W

12. SHIELD Clinic –with specific codes to evaluate visit, resources, patients needs, capacity to consent, communication, what worked and what did not. • SHIELD a confidential referral service for sexual health/relationship issues • Local Special School - BodyWorks SIB Training • New:Knowing Me – Knowing You – Friendship Agency developed 2006 supported by SHIELD and LDPB ( Learning Disability Partnership Board (has SHIELD Link) • Peer Trainers from Because Your Gorgeous Programme • Condom Distribution Scheme via SHIELD Links N O W

13. All local establishments will have a SHIELD Link SHIELD Facilitators and Links will continue to receive updates and training. People with learning disabilities will have easier access to services and improved personal health awareness. I.e improved uptake of cytology screening, breast screening, testicular awareness. Peer trainers to work in raising awareness workshops in primary care and link services. Other services will have SHIELD Links ie advocacy Local special schools to have core group to effectively manage sexually inappropriate behaviours SHIELD Learning Disability Information Network develop further- funding issues. Knowing Me- Knowing You Friendship Agency will have 14-16 years facility. Promote the Bodyworks SRE middle school social inclusion programme. (mainstream and special needs) N E X T

14. The SHIELD Clinic • SHIELD Clinic developed to improve access and promote capacity to consent/understand: • Sexual health • Contraception • Cervical Cytology • Breast Awareness • Pregnancy Advice • Relationships • Resources:Body board, expression board, visual aids, extra appointment times; Pre- visits for groups i.e. People First, Special schools, F.E College Learning Disability Sector, • Service user evaluation: Specific codes to evaluate visit and support further visits; ie resources used-abilities, accompanied etc

15. Comments About SHIELD Intervention • “It made me realise we are important to each other. I would tell my friends about SHIELD helping us”. • “It helped me to do more things together with my girlfriend. Made me think about my feelings. Good to talk to someone who knows about this. Everything was good with SHIELD” (Boyfriend) • “It made me think about how my boyfriend feels and we talked about me and him being a couple- its ok to be a couple!”(Girlfriend) • “I found it easier to talk in company(group) made me think about our relationship.Talking to one another myself and girlfriend. It was nice to meet with Sandie and Teresa and have them to help us”. • Staff response: “The interventions met our expectations –very good. The impact on our clients: They have become to feel free to talk about their relationship now”.

16. Shared SHIELD Programme Good Practice • GUNA Genito Urinary Nurses Association 2006 • National Learning Disability Nurses Network 2006 • The Eddystone Trust West Country 2006 • BILD ( British Institute of Learning Disabilities) Recommended SHIELD Training 2007 • MEDFASH recognises Isle of Wight Integrated Sexual Health Service as a Beacon Service 2007 • ARC- Association for Real Change 2007 • Family Planning Association UK 2005 • University of Southampton School of Nursing & Midwifery

17. Sexuality is an important facet of all our livesThis is 21st Century Unfortunately, traditional approaches towards the sexuality of people with learning disabilities has been characterised by denial and repression. Human Rights Article 8 - Right to respect for private and family life. • Develop your personality and form friendships and relationships with other people; • Enjoy your sexuality; and • Control your body. SHIELD underpins and upholds this Human Right