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  2. Other useful resources and publications

Other useful resources and publications

The Open University Sexuality Alliance is committed to promoting social justice for people with life-limiting conditions and contributing to and extending debates on the topic of sex, sexuality and relationships. The following resources and publications may be useful.

Useful organisations & resources

Action Duchenne

A UK Charity dedicated to funding research into cure for Duchenne Muscular Dystrophy and improving the lives of people affected by DMD.

British Institute of Learning Disabilities

Information and publications, training and consultancy. Published SEX: a book with simple black and white drawings and text.

Brook Advisory Services

Dealing with under 25's sexual health and wellbeing, with a range of leaflets, resources and teaching aids on sexuality and relationships, including for people with learning disabilities and their teachers.

Care Quality Commission: Lesbian, gay, bisexual or transgender people

Addressing inequalities in end of life care

The Care Quality Commission

The independent regulator of health and social care in England. It makes sure health and social care services provide people with safe, effective, compassionate, high-quality care and encourages care services to improve.

The Challenging Behaviour Foundation

The UK charity for people with severe learning disabilities whose behaviour challenges. It works to improve understanding of challenging behaviour, empower families with information and support, and help others to provide better services and more opportunities to make a difference to the lives of children and adults across the UK.

Contact a Family

A national charity that provides information, advice and support for families with a disabled child. It brings families together so they can support each other. It campaigns to improve their family’s circumstances, and for their right to be included and equal in society.

Disability Wales

The national association of disability groups in Wales works to promote the rights, inclusion, equality, and support of all disabled people in Wales.

DMD Pathfinders

A user-led charity which promotes choice and control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy in the UK. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with DMD on issues such as independent living, housing, employment and welfare rights.

Enable - Scotland

A membership organisation for people with learning disabilities and their family carers in Scotland. They have now completed 'Educate and protect from sexual abuse' a project to train people with learning disabilities to support the delivery of training on sexuality and relationships.

Enabled Lives

Enabled Lives offers training and consultancy to those working and living with people who are vulnerable. This includes adults and children with learning disabilities or difficulties, looked-after children and others.

FPA (Family Planning Association)

Provides educational literature, information and advice, a contraceptive display kit, helplines, a library of books and journals, seminars and training on sexuality and learning disabilities

Foundation for People with Learning Disabilities

Works with people and their families to ensure they can use effective services, play a fuller part in communities and society, and enjoy equal rights.

Foundation for People with Learning Disabilities (Scotland)

Works with people and their families to ensure they can use effective services, play a fuller part in communities and society, and enjoy equal rights.

Healthcare Improvement Scotland (HIS)

The national healthcare improvement organisation for Scotland and part of NHS Scotland. It works with staff who provide care in hospitals, GP practices, clinics, NHS boards and with patients, carers, communities and the public. By inspecting care, HIS helps to ensure that healthcare services are meeting the required standards of care, that good practice is identified and areas for improvement are addressed.

Healthcare Inspectorate Wales (HIW)

The independent inspectorate and regulator of all health care in Wales.

LawWorks

A registered Charity which enables access to justice to individuals in need of advice, who are not eligible for legal aid and are without the means to pay for a lawyer. It brokers legal advice to small not-for-profit organisations, to support the continuation and expansion of their services to people in need for free in England and Wales.

Marie Curie Briefing: The reality of end of life care for lesbian, gay, bisexual and transgender (LGBT) people

This report examines some of the barriers LGBT people face in accessing high quality end of life care.

Marie Curie: Hiding who I am - the reality of end of life care for LGBT people

LGBT people experience significant barriers to getting palliative care when they need it. This report explores why

People First

Independent self-advocacy for people with learning difficulties.

Rainbows Children's Hospice

Rainbows children’s and young people’s hospice has ratified their sexuality policy. Alison Cooke, Director of Care at Rainbows was instrumental in producing this comprehensive policy, ably assisted by the Transition team at Rainbows and Dr Claire de Than, Lawyer. The OU Sexuality Alliance advised on several drafts prior to its approval by Rainbows Board of Trustees.

Respond

Provides counselling and therapy for people with learning difficulties, their families and carers and professionals who work with them.

Royal Cornwall Hospitals NHS Trust

Policy for supporting individuals who are transgender

Scottish Consortium for Learning Disability

SCLD is a charity and an independent company made up of Partner Organisations who have joined together with funding from the Scottish Executive to become the Scottish Consortium for Learning Disability. They offer a training course entitled Relationships and Sexuality, which is an accredited module.

Sex Education Forum

Advice and publications on developing sex and relationships education policies, working with parents and carers in delivering sex and relationship education. Their factsheet 32 is: Sex and Relationships Education for children and young people with learning difficulties.

Sexual Health and Wellbeing Network

The Scotland-wide Sexual Health and Wellbeing Network will help by drawing on skills base, knowledge and experience; sharing various approaches and our experiences of them; and developing ways of effectively sharing information.

Sexual Health and Disability Alliance (SHADA)

SHADA was started by Outsiders in 2005.  SHADA produces policy guidelines for GPs, surgeons, therapists, residential homes, colleges, disability agencies, including information on sex and learning disabilities.

The Council for Disabled Children (CDC)

The umbrella body for the disabled children's sector in England, with links to other UK nations. CDC aims to make a difference to the lives of disabled children and children with special educational needs.  It aims to influence Government policy, working with local agencies to translate policy into practice and producing guidance on issues affecting the lives of disabled children.

The General Medical Council (GMC)

Helps to protect patients and improve medical education and practice in the UK by setting standards for students and doctors. It supports them in achieving and exceeding those standards, and takes action when they are not met.

The Nursing Midwifery Council (NMC)

Regulates nurses and midwives in England, Wales, Scotland and Northern Ireland. It exists to protect the public. It sets standards of education, training, conduct and performance so that nurses and midwives can deliver high quality healthcare throughout their careers. It makes sure that nurses and midwives keep their skills and knowledge up to date and uphold professional standards.

The Open University (The OU)

The Open University’s mission is to be open to people, places, methods and ideas. It promotes educational opportunity and social justice by providing high-quality university education to all who wish to realise their ambitions and fulfil their potential. Through academic research, innovation and collaborative partnership it seeks to be a world leader in the design, content and delivery of supported open learning. The Open University is incorporated by Royal Charter, an exempt charity in England & Wales and a charity registered in Scotland.

The Regulation and Quality Improvement Authority (RQIA)

Northern Ireland's independent health and social care regulator.  RQIA encourages continuous improvement in the quality of health and social care services through a programme of inspections and reviews.

The Royal College of Nursing (RCN)

Represents nurses and nursing, promotes excellence in practice and shapes health policies and represents the interests of nurses and nursing and be their voice locally, nationally and internationally.

The Royal College of Paediatrics and Child Health (RCPCH)

Responsible for training and examining paediatricians in the UK. The College has over 16,000 members in the UK and internationally, and sets standards for professional and postgraduate medical education of paediatricians.

The Teenage Cancer Trust

The Teenage Cancer Trust supports teenagers with cancer and their families.

Together for Short Lives

Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. It supports families, professionals and services, including children’s hospices. It helps to ensure that children and young people can get the best possible care, wherever and whenever they need it.

Trans - A practical guide for the NHS

This guide is designed to equip NHS managers at all levels – as employers and as planners, commissioners and providers of services – to understand the needs of trans people so that they can ensure we care for them equally, alongside everyone else who works for the NHS or has need of our care

Trans Equality and Gender Reassignment Policy

This Policy supports the CCGs’ Equality Delivery Scheme and Equality and Diversity Policy

Triangle

Triangle is an independent organisation working directly with children and young people with complex needs. They give expert opinion to the courts and teach and advise parents and professionals.