DRAFT #Nov 06V4a
SEXUAL HEALTH MATTERS
FOR PEOPLE WITH LEARNING DISABILITIES TOO
SALFORD PCT & PARTNERSHIP ORGANISATIONS
LEARNING DISABILITIES SEXUAL HEALTH POLICY
SALFORD PCT & PARTNERSHIP ORGANISATIONS
LEARNING DISABILITIES SEXUAL HEALTH POLICY & GUIDELINES
GEOFF HOLLIDAY & TIM PLANT 2005
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Preface
The area of sexuality and learning disabilities routinely presents services with
complicated emotional, legal and ethical issues. The absence of adequate
guidance and support increases risk for individual workers, the people they
support and the organisations they work in. This policy relates to all
organisations providing services to residents of Salford who have learning
disabilities. Every organisation providing support to a person with learning
disabilities can and should contribute to this important area of growth and
development. All organisations providing education, health or social support to
adults and children with learning disabilities must work together to ensure that
individuals experience a clear and consistent approach as they grow and
develop throughout their lives.
This document has been developed as a collaborative project involving
Community, Voluntary, Non-Statutory, and Statutory organisations from
Salford. Representatives from the following organisations have supported the
development of this document:
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Chatsworth High School
Clinical Psychology, Royal Manchester Children’s Hospital
Cornerstone Project (Barnardo’s & Salford Children’s Service Directorate)
Eccles College
Inscape House (Salford)
Mackay-Gordon Centre, Royal Manchester Children’s Hospital
New Directions (Adult Learning Difficulties Team)
Oakwood High School
Salford Being Heard
Salford Family’s Project (Barnardo’s & Salford Children’s Service
Directorate)
Salford PCT Children’s Community Nursing Team
Salford PCT Psycho-Sexual Health Services
Salford PCT School Health Advisors
Salford PCT Sexual Health Services
The Grange
This document supports staff working with people with learning disabilities in
developing their social and personal relationships. It supports a shared
philosophy, which underpins the rights, responsibilities and risks in relation to
social and personal relationships for children and adults with learning
disabilities, staff and organisations.
It is not designed to deal with situations where staff, carers or people with
learning disabilities feel that a person is at risk of abuse or exploitation.
Existing adult and child protection policies and procedures should be adhered
to in those circumstances.
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LEARNING DISABILITIES SEXUAL HEALTH POLICY & GUIDELINES
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SALFORD PCT & PARTNERSHIP ORGANISATIONS
LEARNING DISABILITIES SEXUAL HEALTH POLICY
Contents
Part 1
Introduction
1.1
Key Definitions
1.2
Policy statement
1.3
Social and personal relationships
1.4
Rights and responsibilities
1.5
Context for sexual health work
1.6
Lifelong education
1.7
Affirming sexuality – sexual expression and respect for diversity
1.8
Conclusion and vision
Part 2
Strategic overview
2.1
Strategic objectives relating to sexual health
2.2
Values
2.3
Principles
2.4
Accessible Information & Services (Relate & 42nd Street) Action Tim/Geoff
2.5
Implementation
Part 3
Key issues
3.1
Lifelong Support Action Tim/Geoff
3.2
Children Action Tim
3.3
Young People
3.4
Adults
3.5
Safeguarding
3.6
Consent
3.7
Privacy & Confidentiality Action Tim/Geoff
3.8
Legal Issues Action Amanda
3.9
Context for multi-disciplinary work
3.10 Personal and sexual relationships
3.11 Partnership working
3.12 Equal opportunities
3.13 Anti oppressive practice
3.14 Pornography & Sexually Explicit Material Action Tim/Geoff/Nigel
3.15 Staff attitudes
3.16 Training
3.17 Service standards, provision, assessment and care management
Part 4
Appendices
4.1
Further Help/Contacts Action Tim/Geoff
Glossary Action Tim/Geoff
4.2
References
4.3
Related Policies & Procedures
4.4
Easy Read Version Action Nigel
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LEARNING DISABILITIES SEXUAL HEALTH POLICY & GUIDELINES
GEOFF HOLLIDAY & TIM PLANT 2005
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DRAFT #Nov 06V4a
Part 1
Introduction
People with learning disabilities have the same rights and responsibilities as
everyone else, but may need help with various parts of their lives. Some
people may need help to understand their rights and responsibilities regarding
social and personal relationships.
Evidence suggests that both adults and children with learning disabilities are
at an increased risk of abuse or neglect. Sometimes there is a difficult
balance to achieve between the promotion of an individuals rights and
safeguarding them from abuse.
For an individual to achieve their own rights they need to have key skills;
knowledge of their rights and responsibilities; and awareness of risks.
Services have a responsibility to empower people with learning disabilities to
achieve their rights. Services must therefore understand the needs of people
with learning disabilities in relation to sexual identity and the potential risks
inherent in meeting these needs.
Services should promote rights by providing accessible information and
opportunities to grow and develop reflecting individuals changing needs.
Where people are able to make their own decisions they should be supported
by services in this. For people who need more support, services need to
understand that individuals rights and needs.
This policy concerns rights, responsibilities and risks in relation to social and
personal relationships for people with learning disabilities, their
carers/relatives, staff and organisations. It is intended that this policy will
benefit people with learning disabilities by helping staff, parents and carers to
understand the part they play in enabling people to grow and develop to
achieve their rights and exercise their responsibilities.
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LEARNING DISABILITIES SEXUAL HEALTH POLICY & GUIDELINES
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1.1
Key Definitions within this policy
The terms ‘learning disability’ and ‘learning difficulty’ are often used
interchangeably. As the term learning difficulty is used in the
Education Act 1996 to include dyslexia and other forms of special
learning needs which are not learning disability as defined in the
White Paper Valuing People, the term learning disability will be used
to avoid confusion.
"Learning disability - includes the presence of a significantly reduced ability
to understand new and complex information, to learn new skills (impaired
intelligence), with; a reduced ability to cope independently (impaired social
functioning); which started before childhood with a lasting effect on
development."
(Valuing People: 2001)
Sexuality encompasses sexual health but sexual health does not
automatically encompass issues of sexuality. Sexual health is a term often
used in association with conditions like HIV/AIDS or sexually transmitted
infections, whereas sexuality is something shaped by, for example,
environment, health, disability and self-concept. Conversely, sexual ill health
would be defined as an inability to express sexuality that is consistent with
individual preferences as a result of physical, emotional, social or
psychological difficulties.
Sexuality - an individual’s self concept, shaped by their personality and
expressed as sexual feelings, attitudes, beliefs and behaviours, expressed
through heterosexual, homosexual, bisexual, or transsexual orientation.
(Sexuality and sexual health in nursing practice: 2000)
Sexual Health - the physical, emotional, psychological, social and cultural
well-being of a person’s sexual identity, and the capacity and freedom to
enjoy and express sexuality without exploitation, oppression, physical or
emotional harm.
(Sexuality and sexual health in nursing practice: 2000)
SRE (Sex and Relationships Education) - learning about sex, sexuality,
sexual health and relationships. It is important to think of it as an ongoing
process. Through SRE, children, young people and adults gain accurate
information and knowledge; develop skills and positive values, which
influence their decision-making, opinions, relations and behaviour throughout
life.
(McKenna: 2005)
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1.2 Policy Statement
This policy concerns rights, responsibilities and risks in relation to social and
personal relationships for people with learning disabilities. It is intended that
this policy will benefit people with learning disabilities by helping staff, parents
and carers to understand the part they play in enabling people to grow and
develop to achieve their rights and exercise their responsibilities.
The idea of having a policy about our own social and personal relationships
would be unacceptable to all of us. These relationships are a very important
and private part of our lives. However, we all have rights and responsibilities
in terms of how we conduct our social and personal relationships and we all
act within some constraints including being subject to current legislation.
People with learning disabilities have the same rights and responsibilities as
everyone else. They may however also need support with various parts of
their lives including developing social and personal relationships and in
understanding their rights and responsibilities. This may necessarily require
support from two or more different organisations giving rise to the need for a
consistent approach.
This policy relates to all organisations providing services to residents of
Salford who have learning disabilities. Every organisation providing support to
a person with learning disabilities can and should contribute to this important
area of growth and development. All organisations providing education, health
or social support to adults and children with learning disabilities must work
together to ensure that individuals experience a consistent approach as they
grow and develop throughout their lives.
Staff, parents and carers may find themselves supporting people with learning
disabilities with sensitive issues and dilemmas regarding their relationships
where there are no easy answers. They will equally be concerned with
balancing the rights of people with learning disabilities to develop social and
personal relationships whilst protecting individuals who might be at risk of
abuse and exploitation.
This document endeavours to describe the rights, responsibilities and risks in
relation to social and personal relationships for people with learning
disabilities, their carers/relatives, staff and organisations.
It is not designed to deal with situations where staff, carers or people with
learning disabilities feel a person with learning disabilities is at risk of being
abused of exploited. In those circumstances adult/child protection
policies/procedures should be used. It is intended that this policy will benefit
staff, people with learning disabilities and their carers by meeting their mutual
interests.
From the outset it is important to note that many people with learning
disabilities will not require intervention or response from staff concerning their
sexual health. However all people with learning disabilities and staff will
benefit from guidelines that outline roles and responsibilities in this area.
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1.3
Social and Personal Relationships
We all have a need for social and personal relationships; the strength of that
need and the way in which it is expressed will be different for each person.
Whilst someone with a learning disability may have frequent contact with
people such as family members, they may not be able to develop other
relationships. This might be due to them having restricted choices or
opportunities, parental attitudes, lack of privacy and high support needs.
As with other people it is important for people with learning disabilities to be
able to develop a range and variety of relationships. These relationships may
therefore include social relationships with acquaintances and more permanent
friendships. They may include a range of sexual relationships including same
sex relationships. They may include marriage or living with a partner.
1.4
Rights and Responsibilities
People with learning disabilities have the same rights to freedom and choice
in what they do within the bounds of their society and its law as everyone
else. As a first principle, people with learning disabilities should be treated as
having equal rights. Issues of consent, mental incapacity and the Mental
Health Act 1983 can be applied to all citizens.
Implicit in this statement is that everyone has a responsibility to respect the
rights of others to freedom and choice. Staff must respect these rights whilst
ensuring that a person with learning disabilities is not open to abuse or
exploitation.
The following is a set of guiding principles, to help solve difficult problems that
have come up for staff, service providers and people with learning disabilities.
People with learning disabilities have the following rights:
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Access to guidance, which will assist them in their social, personal and
sexual development.
Access to support and advice from people who are competent to
provide it
The right to be assisted in pursuing the type of social and personal
relationships they want.
The opportunity to develop close, intimate and loving relationships and
the privacy that this demands.
To have appropriate support and protection from exploitation, abuse
and degrading treatment.
To have information about himself/herself kept confidential.
To have accessible information/explanation in order to make an
informed choice.
To have an advocate, someone to speak on his/her behalf if wanted.
To be treated with respect, consideration and sensitivity.
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To be given support and assistance to make a complaint if they feel
their rights have not been upheld.
People with learning disabilities have the following responsibilities
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To receive advice and information appropriate to their needs
To stay within the law as any other citizen.
To respect the rights of others.
To treat others with respect, consideration and sensitivity.
Carers/Relatives (including paid carers) have the following rights:
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To be clear about their role and the support available to them
To be informed and consulted if the adult with learning disabilities has
clearly expressed this as their wish.
To make representation on behalf of the adult with learning disabilities
and themselves.
To be treated with respect, consideration and sensitivity.
To advice and support from relevant agencies.
Not be held responsible for the action of the adult with learning
disabilities.
To be given support and assistance to make a complaint if their
rights/expectations or the rights of the adult with learning disabilities
have not been upheld.
Carers/Relatives have the following responsibilities:
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To work constructively with others involved in supporting the adult with
learning disabilities as agreed in the care plan or any other agreement.
To treat their relative/adult with learning disabilities with respect and
consideration.
To make distinction between what is in the best interest of their
relative/person with a learning disability and what is in their own best
interest.
To offer a safe and supportive environment which provides appropriate
opportunities for risk taking.
To keep the services supporting them informed where appropriate.
To support the adult with learning disabilities in seeking information
and advice where appropriate.
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Staff and managers have the following rights:
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To be given relevant information, advice, support supervision,
training from someone who is appropriately skilled and conversant
policy on personal and social relationships.
To be treated with respect, consideration and sensitivity.
To be protected from unfair allegations and adverse publicity
supported when allegations are made by means of policies
procedures.
and
with
and
and
Staff and managers have the following responsibilities:
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To work constructively with others within policies and procedures to
support people with learning disabilities in pursuing and social
relationships.
To report any incidents of abuse, neglect or poor practice in line with
their employers’ adult/child protection procedures.
To make appropriate use of supervision and information given.
To seek information and advice.
To support the adult with learning disabilities, and provide them with
relevant and appropriate information.
To ensure that the adult with learning disabilities is kept informed and
treated with respect and dignity in a non-abusive environment.
To ensure that the law is adhered to and any necessary clarification
sought.
To make decisions appropriate to their status in the organisation.
To actively promote best practice according to the value base, policy
and guidelines of the service.
To participate in on-going training to help achieve these responsibilities
and aims.
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1.5
CONTEXT FOR SEXUAL HEALTH WORK
Issues of sex, sexuality and personal relationships have often been treated as
medical issues to be dealt with, for example, by Learning Disability Nurses
and Paediatricians. Sex education has largely been dealt with, within Special
Schools where the quality and quantity has varied across Salford. There has
been little regard for the need for lifelong learning that would enable adult
services to continue this work.
1.6
LIFELONG EDUCATION
TP
1.7
AFFIRMING SEXUALITY – SEXUAL EXPRESSION & RESPECT
FOR DIVERSITY
It is important to understand the cultural context within which a person
lives. This policy affirms the rights of people to their expression of
emotions and sexuality. In providing support to do this the impact of
cultural norms has to be taken into account. Each person negotiates
these individually and It cannot be assumed that people from particular
diverse backgound subscribe to a particular set of norms or
expectations. However to provide support it is important to understand
the cultural norms that influence people.
1.8
CONCLUSION
Issues of sexual health and sexuality should always have been a dimension of
multi-disciplinary work across all service areas.
The requirements of legislation and best practice make it essential for us to
develop a comprehensive framework within which sexual health needs of
users can be considered.
To do this requires us to adopt a clear policy, a comprehensive strategy to
implement this and guidelines to inform practice in each service area.
The policy and strategy are necessary to create the culture in which positive
sexual health work can take place steered by the targets of the “Nation
Strategy for Sexual Health and HIV” (DoH 2001), “Valuing People” (DoH
2001) and “National Teenage Pregnancy Strategy” (DoH 1999), Salford PCT
Sexual Health Strategy (2006)
Prepared by:
Geoff Holliday
Service Development Manager
Sexual Health Services
Salford PCT
Tim Plant
Learning Disabilities Nurse
Children’s Services
Salford PCT
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Nigel Johnson
Quality Development Manager
New Directions Joint Learning Difficulty Service
Salford City Council/Salford PCT
October 2006
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This document is based upon the following source material:
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Cheshire County Council Social Services “Sexual Health Policy & Strategy
to Meet HIV Prevention Objectives of Health of The Nation Report” (1994)
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British Institute of Learning Disabilities: “Policy and Good Practice
Guidelines for Staff Working with People with Learning Disabilities” (2000)
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Good Practice Guidelines on Sexuality “Relationships and HIV/Target
Training and Resources Group on Sexuality HIV and Aids for people
working with People with Learning Disabilities in Wandsworth”
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Sex, Sexuality and People with Learning Disabilities Policy and Guidelines
for Staff, Parents and Carers in Bradford
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Part 2: STRATEGIC OVERVIEW
2.1
SEXUAL HEALTH: IMPLEMENTING STRATEGIC OBJECTIVES
The PCT and partner organisations are supporting the delivery of the Sexual
Health Strategy and Teenage Pregnancy Strategy specifically for people who
have a learning disability. The Salford PCT Sexual Health Strategy (2006)
sets out the following:
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Develop and implement a policy on sexual health, sexuality and
personal relationships. This will be an umbrella policy for all agencies
within Salford across child and adult services.
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Identify the need of learning disabled people for life long sex and
relationships education programmes. (This may include formal and
informal work delivered in a variety of settings, e.g. PHSE delivered in
schools or group-work with adults supporting relationships.)
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Identify and meet the training needs of:
o parents and carers of learning disabled children/adults
o professionals/workers in learning disabilities services
o professionals/workers in sexual health services, leading to the
development of a multi-disciplinary training strategy
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Re-design existing health promotion materials to be accessible for
people who have learning disabilities and support their wider use.
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Support the re-design of sexual health services to meet the needs of
learning disabled people.
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Identify and address the factors that contribute to poor sexual health as
experienced by people who have a learning disability. Improved health
outcomes will include:
o Increasing uptake of cervical screening
o Increasing life opportunities
o Reducing unwanted pregnancies
o Reducing sexually transmitted infections
o Improving poor contraceptive outcomes
o Reducing legally and ethically questionable sterilisation
o Addressing a fundamental health inequality
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2.2.1 VALUES
The values that guide work with people with learning disabilities
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Legal and civil Rights: People with learning disabilities have the right
to a decent education, to grow up to vote, to marry and have a family,
and to express their opinions, with help and support to do so when
necessary. All public services will treat people with learning disabilities
as individuals with respect for their dignity, and challenge
discrimination on all grounds including disability. People with learning
disabilities will also receive the full protection of the law when
necessary.
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Independence: While people’s individual needs will differ, the starting
presumption should be one independence, rather than dependence,
with public services providing the support needed to maximise this.
Independence in this does mean doing everything unaided.
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Choice: We believe that everyone should be able to make choices.
This includes with severe and profound disabilities, who with the right
help and support, can make important choices and express
preferences about their day-to-day lives.
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Inclusion: Inclusion means enabling people with learning disabilities to
do those ordinary things, make use of mainstream services and be fully
included in the local community.
(Valuing People: A New Strategy for Learning Disability for the 21st Century. (2001)
The values guide work in the area of sexuality and learning disability
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Acceptance, respect and support for individuals’ sexual expression and
identity, provided that neither the individual nor others are coerced or
adversely affected by someone’s choice of sexual expression.
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The understanding that people who have learning disabilities need
knowledge and opportunity to develop skills to make healthier choices
that will protect them in the broadest sense.
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These values must work within multi-agency partnerships Equal
Opportunities frameworks.
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All people who have learning disabilities and providers need to have an
understanding of the law relating to sexual behaviour, and a right to
protection from abuse.
In order to make these values a standard of practice for our Partnership
Organisations and to apply them in relation to services we provide and those
purchased from the private and voluntary sector, an integrated strategy needs
to be implemented.
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2.3
PRINCIPLES
The key points of this policy are: Services
To ensure that the sexual health needs of all people who have learning
disabilities as an integral part of planning services, and of assessment and
care management.
Guidelines
To disseminate the values base to address working practice in each service
area, guidance will need to be developed. This may require guidance in
support of a group or individuals development.
Training and Support
To enable service providers to meet these needs and to feel supported by the
policy and strategy.
Working with Parents and Carers
To successfully implement the policy, full consideration must be given to
working in partnership with carers to meet the needs of individuals.
Safeguarding
Safeguarding procedures relating to sexual abuse are a vital dimension of all
our work in supporting and protecting people who have learning disabilities.
Legal and Ethical Issues
The policy provides a framework within which workers can safely address
difficult legal and ethical issues.
a) This policy recognises that sex and sexuality are a positive aspect of
development for all human beings, and that people who use our services
should be guaranteed the relevant advice and support to promote their
physical and emotional health and well being.
b) In applying the policy, consideration has to be given to the dilemma, which
may occur between illegal activity and the need to provide advice on
sexual matters, which may protect individuals from greater physical harm
(e.g. sexually transmitted infections including HIV).
c) Our guiding principle has to distinguish between relationships, which are
entered into on an informed equal basis, and relationships that are
characterised by abuse of power or status.
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3.
KEY ISSUES
Part 3
Key issues
3.18
Sex Education
Underpinning knowledge
People should have full rights and responsibilities as regards their personal
relationship and sexuality including the right to:
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Receive structured education about human development including
sexuality and to be helped to develop a positive self-image of
themselves.
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Learn to communicate about sexuality and to develop the appropriate
language (including non-verbal) and the vocabulary to do so.
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The right to be given information, advice and guidelines on
inappropriate sexual behaviour that might be socially, culturally or
legally unacceptable;
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To be taught about sexual exploitation, i.e. to be aware of situations
when they are at risk of exploitation or of exploiting others. Such
teaching or training should include both information and skill
development.
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The right to information about help with contraception and safer sex.
This should be done in such a way as not to impose over-protective
attitudes.
5.6.1 Key Principles
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It is important that care workers are aware of the law, which particularly
affects people who have learning disabilities with learning disabilities.
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It should be recognised that this is a sensitive area for all and that we
have to avoid our personal, cultural, ethical, moral and/or religious
views conflicting with the interests of others. It is impossible to be
entirely neutral when discussing or teaching value-laden topics, but
good practice dictates that every effort should be made to minimise the
effects of personal attitudes. There should be no expectation that a
staff member shall be required to change his or her own cultural,
ethical, moral and/or religious codes. However, where these prevent a
staff member from being directly involved in aspects of the agreed
programme, they would still be expected to offer their support to other
staff dealing with these issues.
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Staff need to be aware that some people may find sex education
material sexually stimulating.
5.6.2 Training
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Staff should receive training around sexuality issues.
Staff who have a role in delivering sex education should receive
additional specific training.
If concerns remain – Discuss with your Line Manager or at the MultiDisciplinary Planning Meeting.
3.19 Children
3.20 Young People
3.21 Adults
3.22 Safeguarding
All children are deemed to be vulnerable and in need of protection should they
be abused in any way. Child protection procedures are a tried and tested part
of service provision and apply equally to children with learning difficulties as
any other child. Adult Protection Procedures are in place to safe guard
vulnerable adults who do not have the mental capacity to protect themselves
from harm. Adults with severe learning difficulties are by their nature
vulnerable to abuse from others and can be protected under the Multi-agency
Adult Protection Procedures.
Abuse can occur in any setting either a service based provision or within the
individual’s own home. Abuse can be physical, sexual, psychological,
financial, neglect, discrimination or institutional.
There are no hard and fast boundaries to these categories of abuse and
situations may involve more than one aspect of abuse.
Sexual abuse includes any forced or coerced sexual activity. It also includes
some sexual activity which the individual cannot legally give consent.
In acknowledging that people with learning disabilities have the right to sexual
expression, protection needs to take on a wider focus, in the context of
safeguarding against the risks of sexually transmitted infections, unwanted
pregnancies and HIV infection. People who have learning disabilities need
access to a whole range of accessible sexual health information, geared to
their own needs and abilities.
3.23 Consent
Underpinning knowledge (Decision making, by, with and for people with
learning disabilities)
In relation to people over the age of 18 (16 for medical treatment) the law
assumes that people have the mental capacity to make their own decisions
and have the capacity to consent. The Law Commission has stated that
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people should b e enabled and encouraged to take for themselves those
decisions which they are able to take. There are certain circumstances when
the right of an adult to make his or her own decision is taken away. This is
when the adult is considered not to have sufficient understanding to make the
decision and is regarded as lacking legal capacity. Under the Sexual
Offences legislation there is no interest in an individual’s capacity if s/he is ‘a
defective’ or has a ‘severe mental handicap’, because, if that condition exists,
his/her consent is legally invalid. For other people with a learning disability,
the general restrictions on sexual activity in relation to age and consent apply
as they do to all other people.
An adult cannot be deemed incompetent to make a decision about one part of
their life, simply because they have been incompetent in other areas. Each
decision regarding capacity can only relate to that particular decision-making
area. Many people with learning disabilities have never experienced full
choice and control over their lives. The law, the practice of service
organisations, and public opinion have in the past sometimes endorsed the
idea that people with learning disabilities are not able to make decisions for
themselves and need protecting for their own good. This is no longer
considered appropriate. There is further information on the law as it affects
people with learning disabilities and those labelled as being ‘defective’ or
‘severely mentally handicapped’ as defined in the Sexual Offences Act 1956
and 1967 regarding their sexual and personal relationships in Section 1 of the
guidance.
On a practical level, standard consent forms are invalid for people with
learning disabilities. They are unlikely to reflect the depth of exploration
required for ascertaining consent. If concerns regarding the issue of consent
to sexual relationships remain, you may wish to consider the following:
 Advocacy services
 A risk assessment;
 A multidisciplinary discussion concerning the issue, and/or
 Referral to an advisory group within the agency;
 Referral to an expert outside the agency.
 Flow Chart, etc.
The only interests that you should take into account when deciding on a
particular course of action is the person’s best interest. It is not lawful to
balance these interests against the interests of their family, professionals or
the interests of the other people living with the individual.
Key Principles
Where two people with learning disabilities develop a sexual
relationship and appear to be happy with it and there is no evidence of
exploitation, many professionals would consider that it would not be
reasonable to interrupt the relationship, despite the fact that it may be
difficult to establish the capacity to consent. Nevertheless this is a
difficult decision in which those involved with the couple need to
consider the risks to the individuals as well as their rights. Remember
that there are only special legal rules in relation to sexual
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relationships/activity where the person in question is a ‘defective’ or
has a ‘severe mental handicap’ under the 1956 and 1967 Sexual
Offences Act.
Those involved with the people should:




Document their decisions carefully;
Include those closest to the individual, who are familiar with the individual’s
usual pattern of communication (not just a medical practitioner), including
an independent advocate;
Allow sufficient time, in an appropriate location for an assessment to take
place (one assessment meeting may well not be enough);
Include all available and relevant information;
The decisions should:


Be justifiable by those who make the assessment;
Be open to a simple system of challenge.
The person’s potential to make a decision for themselves should be
maximised and this includes effective language and communication skills
by those trying to ascertain whether the individual can make the decision.
This is a crucial point for people with learning disabilities, some of whom
do not use speech and many of whom are easily excluded from decisionmaking by complicated language and concepts.
All practical steps to communicate with, and involve, people must be used
and include:




The use of appropriate words, pictures and symbols;
Involving people skilled in using these techniques;
Involving people close to the individual and familiar with their ways of
communicating;
A suitable environment and enough time for the communication to take
place.
Where there are concerns about people with learning disabilities who may
be engaged in abusive relationships, there are a number of issues, which
should be considered.
These include for example:
 Whether there is a power imbalance between the two people;
 Whether tangible inducements have been used by one person;
 Whether, in the case of heterosexual relationships, the people involved
know about the risk of pregnancy;
 Whether both partners know about safer sex and are able to use this
knowledge.
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The greatest possible care must be given to establishing (full) consent to a
sexual relationship for a person with learning disabilities, not only because
that reflects what is in their best interest, but also because it minimises any
likely legal intervention. However, staff should be cautious of using the
duty of care (see Section 1) to deny people choice.
5.2.4 Training
An understanding about consent issues should be included in the
general training provided for staff, especially in the induction pack.
If concerns remain
If concerns regarding the issue of consent to sexual relationships remain,
you may wish to consider the following:
 A risk assessment;
 A multidisciplinary discussion concerning the issue, and/or
 Referral to an advisory group within the agency;
 Referral to an expert outside the agency.
Flow Chart, etc.
3.24 Confidentiality
People with learning disabilities, who need help with issues of sex and
sexuality, have a right to expect that the confidentiality and sensitivity of the
matter be respected. At the same time, they, as well as staff, need to
understand that some information passed in confidence, relating to situations
of risk, will need to be shared with others (e.g. the line manager).
The sexual health strategy requires reviews and care planning procedures to
address the sexual health and development needs of people who use our
services. The primary aim is to empower individuals (and also ensure
protection, where necessary). This principle should basically direct decisions
about which information needs to be shared. Detailed confidential information
should not be revealed and discussed at a review a matter of routine. If there
are real concerns, about matters of risk or protection, they should be
discussed with the individual beforehand, and, if necessary, referred to the
line manager, to decide how the matter should be handled
3.25 Legal Issues
If concerns remain
Seek legal advice from your agency’s legal section.
3.26 Context for multi-disciplinary work
3.27 Personal and sexual relationships
Underpinning knowledge
Staff need to be aware of the law, policy and good practice that governs their
work. They need to know why relationships are important to people as well as
the reasons for encouraging and developing these. Whilst some individuals
will need support in developing and maintaining relationships, others will not.
It is the individual’s perception of their sexuality, which is important and the
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manner in which they express this within a social situation. This expression
can vary and change according to relationships and contexts.
Staff should be aware of the concept of self-image and identity. Staff should
actively encourage people to take an interest in, and express feelings about,
themselves.
5.3.1 Key Principles







Workers must take responsibility for their own, ongoing training needs
and contribute to their organisations continued development.
Work with people regarding their personal and sexual relationships
must be within the boundaries of confidentiality and privacy.
Workers’ behaviour should be consistent and non-exploitative.
Workers will need to be aware of their own beliefs and values and how
these may impact on their own behaviour.
It is important to be aware of the assumptions, which surround sex and
sexuality, and for staff to understand the reasons why it is important not
to make assumptions about individuals.
Individuals should be encouraged to recognise their own rights and
responsibilities.
Staff should be aware of the sources of support and guidance in
relation to working with people in respect of their personal and sexual
relationships. Staff should be made aware of the action to take should
they encounter situations in which they feel unable to cope.
5.3.2 Training
Training based on Ordinary Life Principles and Person Centred Approaches
usually includes consideration of an individual’s self image and identity.
Although issues of sexuality may not be explicitly addressed, such issues
have relevant connections.
If concerns remain
Where staff has concerns about the support they receive, they should contact
their line manager or other appropriate person (someone you feel comfortable
with – this may be another manager within the department, staff counsellor,
trade union representative or your professional body).
If concerns remain – Discuss with your Line Manager
3.28 Partnership working
3.29 Equal opportunities
Underpinning knowledge
It is commonly recognised that there are groups of people in our society that
are socially excluded groups. These groups of people may be denied access
to facilities, services and employment opportunities. Members from socially
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excluded groups may have very individual needs in the area of personal and
social relationships and care must be taken to ensure equity of service
provision in addressing the individual’s need.
5.11.1 Key Principles
Common prejudice and discrimination have been identified in the following
areas:









Race/ethnic origin.
Creed.
Age.
Gender.
Martial Status.
Class.
Sexual orientation.
Health.
Disability.
Before undertaking work with any individual, staff should familiarise
themselves with issues around discrimination and individual needs of the
person.
5.11.2 Training
All agencies should have in place policies regarding the following:



Anti-oppressive practice.
Anti-discrimination issues.
Equal opportunities.
All staff should be provided with training in respect of the above.
If concerns remain – Where staff feel that equal opportunities are not an
integral part of service delivery they should discuss these concerns with
their Line Manager or another appropriate person (someone you feel
comfortable with – this may be another Manager within the Department,
or your professional body).
3.30
Anti oppressive practice Services use the “social model of disability”
and address the barriers both practical and attitudinal that prevent
people exercising their rights and responsibilities.
3.31
Staff attitudes
In the past, sexual activity amongst people with learning disabilities has
been responded to inconsistently, depending on the attitudes of
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individual staff members. Protection, for example, has tended to take
the form of attempts to deny or condemn sexual activity.
If staff deny or ignore a person’s wish for sexual activity, or the
development of a relationship, the person using the service is likely to
be denied access to advice, knowledge and skills that are essential to
making an informed choice (for example on issues of safer sex). Staff
will also need to be aware of the need for clear boundaries where
personal contact may be misinterpreted and cause confusion. Staff will
then be vulnerable, and open to criticism.
If sexual activity is condemned, the person using the service is given a
negative message about sexual expression. This will not promote a
climate in which sexual health education programmes can be effective.
It also does nothing to prevent the behaviour recurring, even though
this may be inappropriate.
It may even give rise to further
inappropriate or challenging behaviour, of a sexual nature.
Staff therefore, need to acknowledge the sexuality of people with
learning disabilities, by:
 Following the values and principles within the “Sex and Sexuality” policy.
 Being aware of the strategy adopted by the partnership organisations
towards sexual health.
 Developing an awareness of their own attitudes, and how these influence
people who have learning disabilities and decision-making processes.
 Giving appropriate and consistent cues to people who use our services,
and using language and that is non-discriminatory and non-judgemental.
3.32
Training
3.33
PARTNERSHIP WITH PARENTS AND CARERS
Underpinning knowledge
The majority of people with learning disabilities continue to live with
parents or other close family carers and the influence and importance
of those relationships cannot be underestimated. It is also important to
recognise the cultural diversity of individuals and their families, which
may influence decision-making and values and attitudes.
Key Principles
It is important to recognise that parents and carers of people with
learning disabilities have no legal say in what their adult relative does.
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The law does not recognise the ability of anyone to give consent on
behalf of another person. However, it must be recognised that parents
and carers often have an influence, a sense of responsibility, and may
have extreme difficulty coming to terms with their relative’s approach to
their personal relationships and their sexuality. It would be important to
ensure that they are part of a process to decide the capacity to
consent, if in question, of their relative.
People involved with people with learning disabilities need to be
realistic and accept that family relationships are unique in every
situation. It is preferable to initiate contact with carers rather than
respond to anxieties on a crisis basis. Parents/carers should only
participate in discussions about personal and sexual relationships
where the individual concerned has given permission to do so. This
should only be undertaken in private with the individual’s confidante,
key worker or advocate. There may be times when the person cannot
give informed permission or agreement.
It is suggested that when people who have learning disabilities join any
service (day centres, residential accommodation, etc.) a leaflet should
be given to them and parent/carers. This would clearly set out the
service’s position and policies on a range of issues, which, of course,
would include the development of social and personal relationships.
This should include an explanation of the rights of the individuals and a
philosophy statement from the service.
Parents/carers should be offered opportunities to comment and be
involved in the development of education/information about personal
and social relationships for people with learning disabilities.
Information about such areas should be available to parents/carers
before their relative starts to receive a service.
Training
All staff need to be aware of the potential tension between the various
people involved in the care of a person with learning disabilities. This
awareness should be included in an induction pack and training should
be on going.
If concerns remain
A service may wish to develop an explicit framework, which sets out
clearly what the different relationships are between the service and the
parents/carers and the service and the service user. It is important to
achieve a balance between parental/carer involvement whilst ensuring
the needs of the person with learning disabilities are also met. For
example, your service may decide that parents have the right to
information but people who have learning disabilities have the rights to
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confidentiality.
information.
This may need to be clearly stated in the service
It is important to ensure that parents and carers are aware of the
sexual health policy, and involved in discussions. Vehicles for this
could include:
Leaflets explaining the Partnership organisation’s commitment to the
sexual health needs of people who use our service.
Including carers, and possibly some people who use our services, on
staff training events.
Meetings to discuss the issues.
Discussion within individual assessments and reviews.
The differing attitudes of carers towards sexuality need to be
recognised and handled sensitively. At the same time, the rights,
needs and views of the person with learning disabilities must be the
overriding consideration.
Line managers should be consulted where there is an unresolved
conflict of opinion, which will have implications for the service to be
delivered.
3.34
Service standards, provision, assessment and care management
Underpinning knowledge
Authorities agreeing a policy on Personal and Social Relationships will not, in
itself, ensure that people with learning disabilities are effectively supported in
those relationships. As with all policies, it is essential that this be incorporated
into Service Specifications and Contracts.
6.1




Key Principles
Once a Policy is agreed, all providers of services must be made aware of
the policy and its contents. It is advised that all Providers of Services are
able to access training.
All Service Specifications, Contracts and Service Level Agreements
should specify that compliance with the Policy is good practice.
Each Service should have a nominated member of staff who takes the
lead responsibility for ensuring the Policy is implemented.
Contract monitoring arrangements should ensure that the Policy is
implemented and that Managers and staff are aware of it. Failure to
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

6.2
comply should be addressed within the Authorities’ usual contracting
procedure.
Care Managers should ensure that the Policy is implemented in relation
to individuals they are responsible for. Any perceived failure to comply
should be reported to the appropriate contracting forum in line with the
Authorities’ normal procedure.
All services should include guidance on relationships and expectations
about behaviours in the Information Leaflet for People who have learning
disabilities and their carers so that these are clear.
Training
Should be part of the Induction Training for new staff.
If concerns remain
Discuss with the local Registration and Inspection Unit or Social
Services Health Authority Contracts Section.
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5.2.2 12 Key Points on Consent (medical treatment): The Law in
England
When do health professionals need consent from persons?
1.
Before you examine, treat or care for competent adult persons you
must obtain their consent.
2.
People are always assumed to be competent unless demonstrated
otherwise. If you have doubts about their competence, three
question need to be considered:



“Is the person able to understand what is being told to them?”
“Does the person believe what is being said to them?”
“Does the person have the ability to weigh up the options and
potential outcomes?”
Unexpected decisions do not prove the person is incompetent, but it
may indicate a need for further information or investigation.
3.
Persons may be competent to make some health care decision,
event if they are not competent to make others.
4.
Giving and obtaining consent is usually a process, not a one-off
event. Persons can change their minds and withdraw consent at
any time. If there is any doubt, you should always check that the
individual still consents to your caring for or treating them.
Can children give consent for themselves?
5.
Before examining, treating or caring for a child, you must also seek
consent. Young people aged 16 and 17 are presumed to have the
competence to give consent for themselves. Younger children who
understand fully what is involved in the proposed procedure can
also give consent (although their parents will ideally be involved).
In other cases, someone with parental responsibility must give
consent on the child’s behalf, unless they cannot be reached in an
emergency. If a competent child consents to treatment, a parent
cannot over-ride that consent. Legally, a parent can consent if a
competent child refuses, but it is likely that taking such a serious
step will be rare.
Who is the right person to seek consent?
6.
It is always best for the person actually treating the patient to seek
the patient’s consent. However, you may seek consent on behalf of
colleagues if you are capable of performing the procedure in
question, or if you have been specially trained to seek consent for
that procedure.
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What information should be provided?
7.
Persons need sufficient information before they can decide whether
to give their consent; for example information about the benefits
and risks of the proposed treatment and alternative treatments. If
the patient is not offered as much information as they reasonably
need to make their decision, and in a form they can understand
their consent my not be valid.
8.
Consent must be given voluntarily; not under any form of duress or
undue influence from health professionals, family or friends.
Does it matter how the patient gives consent?
9.
No; consent can be written, oral or non-verbal. A signature on a
consent form does not itself prove the consent is valid – the point of
the form is to record the patient’s decision, and also increasingly the
decision, and also increasingly the discussions that have taken
place. Your Trust or organisation may have a policy setting out
when you need to obtain written consent.
Refusal of treatment
10.
Competent adult persons are entitled to refuse treatment, even
when it would clearly benefit their health. The only exception to this
rule is where the treatment is for a mental disorder and the patient
is detained under the Mental Health Act 1983. A competent
pregnant woman may refuse any treatment, even if this would be
detrimental to the foetus.
People who are not competent to give consent
11.
No one can give consent on behalf of an incompetent* adult.
However, you may still treat such a patient if the treatment would be
in their best interests. “Best interests” go wider than best medical
interests, to include factors such as the wishes and beliefs of the
patient when competent, their current wishes, their general well
being and their spiritual and religious welfare. People close to the
patient may be able to give you information on some of these
factors. Where the patient has never been competent, relatives,
carers and friends may be best placed to advise on the patient’s
needs and preferences.
12.
If an incompetent patient has clearly indicated in the past, while
competent, that they would refuse treatment in certain
circumstances (an “advance refusal”) and those circumstances
arise, you must abide by that refusal.
(Department of Health (2001)
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5.8
PORNOGRAPHY AND SEXUALLY EXPLICIT MATERIAL
Underpinning knowledge
Pornography and sexually explicit materials may include newspapers, mail
order catalogues, magazines, books, videos, pictures and specialist telephone
services. Some of this kind of material is sometimes referred to as ‘soft porn’
or ‘top shelf’ and is legally available to people, others are generally available.
Whatever an individual member of staff’s feelings about such material it is
important to distinguish it from materials which would breach the Obscene
Publications Act. These materials would, for example, feature illegal sexual
activities, often involving children, animals or torture.
It is illegal to purchase or own these sorts of materials. It is also an offence to
obtain such material for others.
5.8.1 Key Principles



While staff may be involved with a Service User who wishes to access
such material, they also have a responsibility to explain issues of privacy
in regard to its use, the offence it may cause to others, and the legal
context of such material (e.g. not showing it to minors).
Staff must not promote or initiate the introduction of pornography and
sexually explicit material to an adult with learning disability.
Services should ensure that people who wish to access or purchase
pornography and sexually explicit material do so discreetly and confine
its use to within the privacy of their own rooms.
5.8.2 Training
As part of Induction Training, all staff should receive input that encourages
them to explore their personal values and attitudes in respect to issues of
sexuality and the potential tensions between these and effective professional
practice.
NB: There appears to be no published research regarding the use and effects
of pornography and sexually explicit material by and on people with learning
disabilities. Most published research focuses on the sex offender population,
and therefore does not deal with people who have learning disabilities who
use such material and do not commit sexual offences.
If concerns remain – If staff are unclear or concerned about the possible
consequences of a Service User accessing pornography and sexually
explicit material, a multi-disciplinary Risk Assessment should be
undertaken.
Factors to be considered in such a Risk Assessment would include:
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



The People who have learning disabilities’ existing sexual values,
attitudes and knowledge, including their capacity to realise such material
may well cause offence to others.
Their capacity to comprehend the ‘fantasy’ element often present in such
material.
Whether they previously or presently display sexually inappropriate or
abuse towards others.
Their capacity, and the Service’s support, to ensure such material is used
and kept privately.
It may be helpful for staff to involve a specialist, such as a clinical
psychologist, in the assessment of such factors.
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5.12
TRAINING
The strategy clearly outlines the training needs for all staff regarding
the “Sex and Sexuality” Policy, and the development of sexual health
work. This ranges from basic awareness raising for all staff, to more
in-depth training for those looking to develop sexual health
programmes for people who use our services.
Staff in the learning disabilities field need access to specific materials
geared to the great variety of abilities and needs of the people who use
the service. Programmes may need to be run individually or in small
group settings.
The framework for training support and supervision is contained within
the strategy for sexual health.
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5.13
CONFIDENTIALITY
.
Sexual health needs are an integral part of overall health and wellbeing. The Standard Assessment forms section regarding Health
and Emotional well-being is the place to consider this.
In providing services great care should be taken by staff to be sensitive
and responsive to arrangements and suggestions, which may impinge
on relationships and sexuality. (It is possible that the impact may not be
immediately obvious.) Staff need to think creatively in addressing
individual needs, e.g. in the provision of equipment which may enhance
quality of life in general but may, if not explored sensitively, have an
adverse affect on the sexual health or relationship of the service user
and partner.
Intimate personal care tasks should of course be dealt with very
sensitively. Staff need to recognise that intimate personal care tasks,
e.g. washing, toileting, etc, may be upsetting for close relatives
particularly partners who may feel unhappy that such tasks are
sometimes undertaken by others. Staff should consider the potential
impact on the emotional and personal relationships of the service user,
which may not be obvious or spoken about.
Conclusion
This document developed as a collaborative project provides a platform
for consistent multi-agency working for all people with learning
disabilities. It will not provide definitive solutions and answers to all the
situations and questions you may have concerning this work. It will
provide a framework within which the right questions may be asked
and guidance toward a solution.
Each situation will be different and everyone you work with is an
individual. This document will help to protect and enrich the lives of
people who have a learning disability and support and protect those
who provide care services to this potentially vulnerable group.
Key points to observe at all times are DIGNITY, CHOICE AND RESPECT.
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