1. Our Passion, Your Care. Learning Disabilities and Autism Awareness October 2013 Sally Ryan –Learning Disabilities Liaison Nurse Specialist

2. Our Passion, Your Care. What is a learning disability? A significantly reduced ability to understand new or complex information and to learn new skills with a reduced ability to cope independently which started before adulthood, with a lasting effect on development. Learning Disability does not include all those with a learning difficulty.

3. Our Passion, Your Care. Numbers The Department of Health suggests Learning Disabilities affect approximately 2% of the population. In the East of England there are approximately 113,000 people with a learning disability. Within this hospital there will be between 9 and 18 people with a learning disability in any one day. There are over half a million people in the UK with autism - that's around 1 in 100.

4. Our Passion, Your Care. Degrees of learning disability MILD- 89% Live independently, have their own families, often in employment and have no need for services unless they are in crisis MODERATE- 6% Will require some degree of support and may have difficulty communicating their needs. Often living in supported living schemes or with their families. SEVERE- 3.5% Have significantly increased health needs including Epilepsy, sensory impairments, physical health needs. Have complex, high support needs and great difficulty expressing these. PROFOUND- 1.5% As for Severe but may also exhibit behaviours which challenge service provision. May engage in self injurious behaviours due to frustration.

5. Our Passion, Your Care. What is Autism? Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.

6. Our Passion, Your Care. How to Recognise a Learning Disability Communication difficulties. Difficulty in providing sequential histories. Provision of irrelevant information. Difficulty in understanding questions and responding to information quickly. Inability to deal with more than one question or task at a time. Repetition of phrases in conversation. Lack of understanding or vagueness. Difficulty in following straightforward instructions. Poor planning and sequencing abilities. Difficulty in understanding abstract concepts such as time, distance or directions. Confusion about times of appointments.

7. Our Passion, Your Care. Other things to consider when identifying the presence of a learning disability Ask the person if they have a learning disability or autism; educational history, support needs. Can the person recall facts about themselves (where they live, their birthday how old they are)? Can the person read, write or tell the time? Is the person known to the Learning Disabilities service - do they have a support worker, social worker, community nurse, key worker or psychiatrist? Ask if the person attends a day centre/specialist service

8. Our Passion, Your Care. What is the evidence? It has been Identified that people with a learning disability are vulnerable in acute hospital settings:  They are more likely to experience discrimination  Treatment is often inadequate  Care has often been found to be neglectful  A lack of understanding and knowledge about people with a learning disability  Evidence of poor attitude and beliefs held by some health staff  A lack of confidence when engaging with people who have a learning disability Understanding the patient safety issues for PLD (NPSA 2004) Healthcare for All ( DoH 2008) Death By Indifference (MENCAP 2006) A Life Like Any Other (Healthcare Commission 2007) Valuing People Now (DoH 2009)

9. Our Passion, Your Care. Health Inequalities People with learning disabilities have poorer health than their non-disabled peers. The inequalities start early in life. They have a shorter life expectancy and increased risk of early death. Additionally their general health is not as good.

10. Our Passion, Your Care. Determinants of Health Inequalities Poverty, poor housing, unemployment, social disconnectedness, overt discrimination Genetics and biological factors Communication and access health literature Diet, exercise, obesity and underweight Access to healthcare- consent issues

11. Our Passion, Your Care. What are the Health Issues Heart and circulatory disorders (22%)- still less than general population Respiratory Disease- most frequently final event leading to death Oral health Diabetes Gastro- oesophageal Reflux Disease (GORD) Constipation Osteoporosis Endocrine Disorders Sensory Impairments Physical Impairments Mental Health issues and Challenging Behaviour Dementia Epilepsy Cancer- (20%) particularly Gastro-Intestinal cancer High prevalence of helicobacter pylori (class 1 Carcinogen linked to stomach cancer, gastric ulcer and lymphoma) Weight- (17% underweight/2% general population)

12. Our Passion, Your Care. Setting the scene Reports- Death By Indifference »Six Lives »Healthcare for All Training, collect data, families as partners in care, assessment of needs Of PLD,LD Public Health Observatory, reasonable adjustments, Inspection and regulation, Directed Enhanced Services through CCGs, Involvement, Board reporting on reasonable adjustments (advocacy) Winterbourne View »Winterbourne Inquiry and Report CIPOLD Review

13. Our Passion, Your Care. Needs and Challenges  Difficulty communicating and expressing needs and choices.  Difficulty understanding their diagnosis and treatment options.  Difficulty with adapting to a hospital environment and the expectations of hospital staff.  Difficulty reporting symptoms.  More likely to express pain in ways that may be difficult to interpret.

14. Our Passion, Your Care. Illnesses promptly recognised Delays in Diagnosis Difficulty with diagnosis Problems with treatment Multi-morbidity

15. Our Passion, Your Care. Recommendations Use your LD register to alert Good information sharing- tell the hospital! Good co-ordination/ patient held records Annual health checks Adhere to the MCA Use IMCA Community DNACPR- use guidelines Good record keeping

16. Our Passion, Your Care. Reasonable Adjustments Reasonable adjustments are those necessary changes to our normal routine practices which support accessibility to our service. Some adjustments are relatively easy to make where others may require more creativity and forward planning.

17. Our Passion, Your Care. Examples of Reasonable Adjustments First or last appointment, avoiding long waiting times Flexible appointment times (Choice) to facilitate ‘expert carers’ Double appointments to allow for good communication Multiple investigations arranged for the same day to avoid repeated visits and additional anxiety Support prior to the appointment, desensitisation in order to access the hospital or receive treatment, teaching to facilitate consent Robust planning of the episode of care Make sure you know the individual’s needs- likes/dislikes, communication, how they express pain Never assume it is ‘just’ because of the learning disability- diagnostic overshadowing Have the right equipment available to avoid waiting and tell people what it is for Tell people what the plan is, include people in the decision making process

18. Our Passion, Your Care. Communication Communication- At least 50% of people with learning disabilities have significant communication difficulties. Expressive communication can be at different levels i.e. they may understand more or less than they appear from their verbal skills. Address the communication needs of each individual as they vary.

19. Our Passion, Your Care. Communication Tips May use Makaton or BSL, or communication aids- can a carer help? Use simple everyday language Allow sufficient time for the person to answer your question Always speak to the person first Speak clearly, not too fast, short plain sentences Use simple terms- use visual aids to support Use positive language where possible Use anchor events Use open ended questions as much as possible, closed to clarify Try asking the same question in a different way Ask them to explain to check understanding

20. Our Passion, Your Care. Other factors Unpredictability breeds anxiety- explain things clearly Consider special needs- sensory impairments, physical access Allow enough time Put them at ease Invite someone to support them Check understanding Be aware of how you come across

21. Our Passion, Your Care. Pain Assessment Abbey Pain Tool or Dis-Dat: Vocalisation Facial expression Change in body language Behavioural change Physiological change Physical change

22. Our Passion, Your Care. What is mental capacity? Mental capacity is the ability to make a decision Capacity can vary over time Capacity can vary depending on the decision to be made Physical conditions, such as location, can affect a person’s capacity Staff must not assume a lack of capacity because of a person’s age, physical appearance, condition or an aspect of their behaviour

23. Our Passion, Your Care. The five core principles (Code of Practice, Chapter 2) 1.A person must be assumed to have capacity unless it is established that they lack capacity. 2.A person is not to be treated as unable to make a decision unless all practicable (doable) steps to help them to do so have been taken without success. 3.A person is not to be treated as unable to make a decision merely because they make an unwise decision. 4.An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in their best interests. 5.Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

24. Our Passion, Your Care. How to assess capacity (Code of Practice, 4.11-4.13) The two-stage test of capacity:  is there an impairment of, or disturbance in, the functioning of the person’s mind or brain?  if so, is the impairment or disturbance sufficient to cause the person to be unable to make that particular decision at the relevant time? Staff should always keep records of any assessment

25. Our Passion, Your Care. Questions that must be considered when assessing capacity Does the person have the ability to: understand the information? retain information related to the decision? use or assess the information while considering the decision? communicate the decision by any means?

26. Our Passion, Your Care. Skills to support decision making Allow enough time Explain things clearly Use resources such as equipment (objects of reference), easy read materials etc to help explain Utilise support (LD Liaison/ Community Team/ Carer)

27. Our Passion, Your Care. IMCA Services The NHS decision maker MUST refer any person who has no ‘appropriate’ family and friends and lacks capacity to make a decision about either: Serious medical treatment Long term moves (more the 28 days in hospital/8 weeks in a care home) Deprivation of Liberty Safeguards The local authority/NHS decision maker MAY refer any person who lacks capacity to make a decision about either Care review - with no ‘appropriate’ family or friends Safeguarding referral - victim or alleged perpetrator, regardless of family and friends

28. Our Passion, Your Care. Voiceability VoiceAbility Suffolk St Clement's Hospital Foxhall Road Ipswich Suffolk IP3 8LS Tel: 01473 329671 Fax: 01473 274422 Email: imca@voiceability.orgimca@voiceability.org

29. Our Passion, Your Care. Key Principles To respect and uphold the rights of all people who have a learning disability when they come into your practice To make reasonable adjustments in order to support the delivery of equal treatment To start with the presumption that people with a learning disability can be at the centre of decision making about their own care Where a person with a learning disability is deemed to lack capacity: decisions about care are made in their best interests