Multi Professional Education Session for community health care workers A training framework, access to healthcare for patients with learning disabilities

Education Session Aims & Objectives To provide basic learning disabilities awareness including Definitions Health needs Basic awareness of legislation Communication Adapted approaches

What is a Learning Disability Definition of a Learning Disability – A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence – Intelligence Quotient IQ of 70 or below with A reduced ability to cope independently (impaired social functioning) Which started before adulthood, with a lasting effect on development. (Valuing People - Department of Health, 2001)

What a learning disability is NOT What a learning disability is NOT – Is NOT a learning difficulty – this is an educational term applied to problems such as dyslexia Is NOT a Physical illness Is NOT a mental illness Is NOT acquired in adulthood e.g. not a result of brain injury from an accident A person with Aspergers Syndrome will not have a learning disability

Prevalence Department of Health figures suggest an estimated 1.5 million people have a learning disability – this equates to approximately 2.5 percent of the population. Individual’s may have different degrees of a learning disability, each individual should be seen as a person first with different strengths and weaknesses. The degrees are identifies as- Mild – IQ of (Estimated 74% of LD population) Moderate – IQ of (Estimated 20% of LD population) Severe – IQ of (Estimated 6% of the LD population) Profound – Below 20 (accommodated in severe %) Severe learning disability is relatively evenly spread in the population. Mild to moderate learning disability is linked (although not in all cases) with poverty with higher rates in deprived areas.

Prevalence The prevalence of learning disability is expected to rise by around one per cent per annum for the next 10 years, to a growth overall of ten per cent by It is believed that there will be a growth in the complexity of disabilities. This is attributed to – Improvements in maternal and neonatal care Improvements in general health care for adults which lead to increased life expectancy Increased use of alcohol in the UK UK rates of teenaged unplanned pregnancy Increased prevalence of young English adults from South Asian minority communities where the prevalence of learning disabilities is higher (Emerson et al, 1997)

Range & Increased Health Needs People with learning disabilities are some of the most vulnerable members of our society today. They have significantly worse health than the general population. They have higher levels of unmet health need and receive less effective treatment, despite the fact that the Disability Discrimination Act and Mental Capacity Act set out clear legal framework for the delivery of equal treatment. Insufficient attention is given to making reasonable adjustments to support the delivery of treatment. People with learning disabilities find it much harder than other people to access assessment and treatment for general health problems than have nothing directly to do with their disability. All statements taken from Health Care for All, independent inquiry into access to health care for people with learning disabilities. Sir Jonathan Michael 2008

Range & Increased Health Needs People with learning disabilities are suggested to be 58 times more likely to die by the age of 50 than the general population. Early deaths to some degree are preventable. Hollins et al (1998) & DRC (2006) Some Health Statistics- Epilepsy – approximately one third of people with learning disabilities have epilepsy (at least twenty time higher than the general population). Risk of SUDEP is greater in people with learning disabilities, NICE audit indicated that 60% of child and 40% of adults cases were avoidable Mental Illness – approximately 25-40% compared to 25% of the general population Coronary Heart Disease – second most common cause of death Hypothyroidism – 10-20% of people with down syndrome Diabetes – 10 times more common than the general population Cancer – Higher incidence than general population – including gastro-intestinal cancer.

Disability Discrimination Act & Disability Equality Duty 45,000 public bodies across Great Britain are covered by the Disability Equality Duty (DED), which came into force in December The DED is meant to ensure that all public bodies - such as central or local government, schools, health trusts or emergency services – pay ’due regard‘ to the promotion of equality for disabled people in every area of their work. The basic requirement for a public authority when carrying out their functions is to have due regard to do the following:  promote equality of opportunity between disabled people and other people  eliminate discrimination that is unlawful under the Disability Discrimination Act  promote positive attitudes towards disabled people  eliminate harassment of disabled people that is related to their disability  encourage participation by disabled people in public life  take steps to meet disabled people’s needs, even if this requires more favourable treatment.  ‘Due regard’ means that authorities should give due weight to the need to promote disability equality in proportion to its relevance.

Overcoming barriers Communication needs: Incidence of significant communication difficulties among people with a learning disability is high, estimated as 40 – 50 %. Communication is a key consideration for all those who come into contact with people with a learning disability. Communication is defined in two areas, comprehension and expression.

Overcoming barriers: Communication Needs Comprehension – Most people with a learning disability have some difficulty in understanding language at some level People frequently assume that people understand more than they are actually able to It is often assumed that a person’s comprehension and expression abilities are roughly the same Non-verbal information e.g. gestures, routine and peer behaviour often gives a great deal of information Four Key areas to consider are – Vocabulary used, Complexity, Sentence Construction & the amount of information given

Overcoming barriers: Communication Needs Expression It is never true to say that some one is ‘unable to communicate’ Most people with a learning disability have some difficulty in expressing themselves at some level The ability to express one’s needs is central to achieving a better quality of life People with Learning Disabilities often require communication method to be adapted Complicated verbal language may not be what an individual is able to comprehend or a way that an individual may express themselves Examples of alternative and augmentative communications are: Makaton – this is a method of communicating through sign Picture Exchange Systems – individuals may exchange pictures/symbols/objects of reference in exchange for their desired outcome/need/activity Eye pointing – looking at desired object, looking in a direction to answer a question as prompted, eye pointing to symbols etc

Overcoming barriers Communication Expectations- You are not expected to be able to use all alternative methods of communication. However if you are aware of the method that an individual uses you will be able to go someway towards adapting your approach or ensuring that someone is available to support both the individual and you during appointments. Would you speak complex English to a non-English speaking French patient? If your answer is NO, what would you do to communicate in that appointment? Do any of the same principles apply? Practical example – audio tape / picture drawing

Overcoming barriers Physical Access: This may be in terms of physical access e.g. wheelchair users, other physical disabilities that may restrict movement and access, for people with complex sensory needs e.g. visual, auditory, tactile etc. This may be in terms of adapted access for people with complex needs which may be attributed to an individuals level of comprehension, past experiences, fear, increased anxiety, physical health needs that require equipment, behaviours that challenge services and individuals who may require adjustments to ensure consent is obtained.

Access issues: Personal Lack of Autonomy - reliance on others to recognise symptoms & instigate contact with health services. Fear of clinical environments. Fear of medical procedures. Difficulties understanding consultation process. Anxiety working with new people.

Access issues: Physical Signposts Wide doors (specialist wheelchairs) Toilet facilities Hoist Ramps Waiting room facilities Noisy and busy environments

Access issues: Organisational Rigid appointment systems Short appointment times Long waiting times Reliance on written information Limited time and opportunity to build confidence and trust with the patient.

Access issues: Professional Lack of confidence and limited experience of working with people with a Learning Disability Diagnostic overshadowing Limited understanding regarding key areas – Consent & Mental capacity Act Asking carers/parents opinions before those of the patient; e.g. ‘How is she feeling today?’

Overcoming barriers Other recognised barriers include Social and cognitive attitudes Values and attitudes Lack of collaborative working – including working with families and carers

Capacity & Consent Mental Capacity Act 2005, 5 key principles– Presumption of capacity Maximising decision making capacity Right to make unwise decisions Best interest Least restrictive alternative

Mental Capacity Act 2005 – Best interest checklist Avoid discrimination Encourage participation Maximise opportunity for participation Can the decision be delayed (fluctuating capacity) Establish past and present wishes, values and beliefs about the issue Consult people named by the person as knowing their wishes Consider the views of carers or other interested parties

Consent No one can consent on behalf of another adult A person is presumed to have capacity to make decisions, even if they are making bad choices (e.g. lottery) The person carrying out the procedure is responsible for ensuring the person can/has given consent.

Questions Opportunity to ask questions…….