Learning Disabilities Awareness Training for all SCH Staff

1. Learning Disabilities Awareness Training for all SCH Staff

2. Introduction • This presentation offers a general overview of the needs of people with a learning disability and supports staff working with them to achieve better outcomes of care and communication. • Staff working within Community Paediatric Services will be involved with the assessment and care of children with learning disabilities. This learning package supports this work and offers further guidance with regard to communication strategies. Staff should be directed to speak to their team lead if there are particular concerns in responding to the needs of a particular patient group, or if more in depth information or training is needed.

3. Objective & Outline • Objective- By the end of this session you will be able to identify 3 areas where you can further support clients with a Learning Disability (LD). • It is hoped that following this course you will feel more confident in supporting people with LD using our services

4. Contents • Introduction to LD • Communication • Policy and Law • Services • Mental Health problems with LD • Physical Health problems for people with LD • Risk of Abuse • Support (for them and you)

5. Introduction to Learning Disabilities A LD is usually caused by the way the brain develops - before, during or soon after birth. It is lifelong and usually has a significant impact on a persons life. People with a LD usually find it harder than others to learn, understand and communicate. People with profound and multiple LD (PMLD) need full-time help with every aspect of their lives - including eating, drinking, washing, dressing and toileting. There are 1.5 million (2% of the population) with a LD in the UK. Like all of us, they are individuals who want different things in life and need different levels of support. LD is not a mental illness or dyslexia, but when a person has LD with another condition this often makes their needs more complex… we will be looking at this in more detail later on.

6. Introduction to Learning Disabilities Cont’d The Department of Health (2001) in England defined LD as a combination of: • A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence); with • A reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development It is important to remember that learning disability does not include all those who have a 'learning difficulty', which is more broadly defined in education legislation.

7. Introduction to Learning Disabilities Cont’d Most people with a LD are treated as 'different'. But they are individuals like the rest of the population and have their own distinct personality, characteristics, history, values and opinions. People with LD are a group of people who in law have the same rights as any other citizen, though in the past, and still today, they continue to be excluded and discriminated against. Discrimination can occur in the form of "diagnostic overshadowing"where a persons presenting problems are put down to their LD rather than seeking another potentially treatable cause.

8. Introduction to Learning Disabilities Cont’d Some facts from MENCAP • People with a LD are 58 times more likely to die aged under 50 than other people. • Just 1 in 3 people with a LD take part in some form of education or training. • Less than 1 in 5 people with a LD work (compared with 1 in 2 disabled people generally), but at least 65% of people with a LD want to work. • Half of all families with children with a LD live in poverty. • At least half of all adults with a LD live in the family home - meaning that many don't get the same chances as other people to gain independence, learn key skills and make choices about their own lives. • Just 15% of people with a LD have a secure long-term tenancy or own their own home.

9. Communication The Government White Paper 'Valuing People' (2001) followed by says that people with LD should have: Independence, Choice, Rights and Inclusion. Valuing People Now Effective communication is fundamental in achieving these principles. People with LD may have difficulties with spoken and written language, coordination, attention, or self control. Some people with LD find it difficult to communicate pain or distress in an understandable way and may express this by changes in behaviour or personality. Resources and information about the strategy available at: Link to National Archives.gov.uk

10. Communication Cont’d Communication difficulties occur to varying degrees, depending upon the type and extent of LD and the presence of an associated physical disability such as cleft palate, cerebral palsy or hearing impairment. There is an increasing recognition that difficulties with communicating over a lifetime often contribute to low self esteem, social isolation and loneliness, lack of trust, frustration and anger. Finding ways in which people with LD can communicate, and ways other people can communicate with them, can make a big difference to their quality of life. Click here to read more Bild Information and Factsheets

11. Communication Cont’d • help them to feel secure and safe from harm • spend time to develop a rapport with them • ensure they have as much choice and control over their treatment as possible • encourage and support them to build social networks • support them to improve their physical health So how can we help people with LD using our services to communicate what they are thinking and feeling?

12. Communication Cont’d • People with LD do not have one recognised tool for communication, and are often dependent on professional intervention to develop an individually tailored communication plan. • There are a variety of communication aids which can help communication for people with LD, e.g. from organisations such as those below (click on the links to learn more). Change Bank – provides accessible information Makaton - language programme using signs and symbols Widgit software (symbols for writing)

13. Policy and Law In 2008 the Joint Committee on Human Rightsstated it is still necessary to emphasise that adults with LD have the same rights as everyone else. Since 1995 it has been unlawful to discriminate against people with a disability, including those with a LD. The Equality Act 2010requires information to be provided in an accessible format about treatment options, complaints procedures and appointments. 'Reasonable adjustments' must be made to the way that services are delivered in order to meet the needs of disabled users.

14. Policy and Law Cont’d The Mental Capacity Act (2007)introduced a new criminal offence of ill treatment or neglect of a person lacking capacity. It put into statute the principle that everything must be done in the best interest of the patient.

15. Policy and Law Cont’d The English policy for people with LD is the Department of Health (2001) Valuing People; a new strategy for learning disability for the 21st century. Click here http://www.archive.official-documents.co.uk/document/cm50/5086/5086.pdf The Green Light Toolkit (GLTK) (2004) is one way in which this policy is being implemented. The GLTK is an audit tool used to measure how the National Service Framework for Mental Health (1999) is being implemented for people with LD. It offers a traffic light scoring system and provides guidance on how services can be improved. www.workingwithwords.org/PDF/greenlight_toolkit.ppt

16. The Trust's Green Light Strategy Group This is a partnership meeting with the providers of specialist LD services, who are Hertfordshire Partnership Foundation Trust. This group discuss and take forward improvements in mental health services in the Trust. To find out more about the Green Light Strategy Group please contact Nicola Armstrong, Advanced Clinical Specialist (LD), or the Chair of the group…see i-connect page for LD (Teams and Services; Learning Disability Pages)

17. Services People with LD have the same rights of access to mainstream statutory services as any other citizen, such as using their GP, dentist and secondary services. Other services are provided by a range of non-statutory organisations. The following links may be of interest: • http://www.suffolk.gov.uk/care-and-support/adult-social-care/learning-disabilities • http://www.suffolk.nhs.uk/Home/Getinvolved/ConsultationsandEngagement/Closedconsultations/LearningDisabilitiesConsultation/tabid/2930/ItemId/4276/Default.aspx

18. Services Cont’d NHS East of England plan to improve access to health services across the region for patients with learning disabilities and are working with PCTs, CCGs and Local Authorities https://www.eoe.nhs.uk/page.php?page_id=2123

19. Services Cont’d (click on the links) • https://www.eoe.nhs.uk/page.php?page_id=2123 • Local Disability Teamshttp://www.smhp.nhs.uk/OurServices/LearningDisabilityServices/tabid/204/Default.aspx • http://www.smhp.nhs.uk/OurServices/LearningDisabilityServices/Stourmeadlearningdisabilitiesservices.aspx • http://www.smhp.nhs.uk/OurServices/LearningDisabilityServices/WestSuffolkDisABILITYresourcecentre.aspx • http://suffolk-carers.org.uk/index.php?option=com_content&task=blogcategory&id=26&Itemid=178 • MENCAP services • Advocacy

20. Mental Health Problems with LD Most people with LD live in the community and have the right to equal access to mainstream health services. However, specialist services are sometimes needed to provide additional support. It is important that you feel confident in supporting these vulnerable people to ensure they get the best service possible. People with LD are: • More likely than others to suffer mental ill health • Experience the same range of mental health problemsbut have a higher prevalence than the general population • Are more likely to have undetected and untreated mental health needs

21. Mental Health Problems with LD Cont’d It is estimated that 16-25% of the population are likely to have a mental health problem at some point in their lives. This compares with an estimated 25-40% of people with LD who experience more of the risk factors associated with mental ill health. There seem to be 4 key reasons for this….. 1. Many LD syndromes of genetic origin are associated with psychiatric disorders 2. Brain trauma often results in psychiatric problems 3. People with LD are much more likely to encounter traumatic life events that make them more vulnerable to mental health problems 4. Social restrictions experienced by people with LD may endanger their mental health

22. Mental Health Problems with LD … detection Generally the signs and symptoms of psychiatric disorders presented by adults with mild learning disability and reasonable verbal communication are similar to those presented by adults in the general population. It is more difficult to detect psychiatric disorders in adults with moderate to severe LD or autism. These individuals are likely to exhibit disturbed and regressive behaviours as presentations of psychiatric disorder. How do we detect mental health problems? • What people say they are experiencing • What others say about them • How they are seen to behave • History of the complaint • Family history • Recent trauma/traumatic events

23. Mental Health Problems with LD…Detection cont’d Carers play a central role in the identification and assessment of mental health problems in individuals with LD. Some problems can be very difficult to diagnose in people with LD and so it is important to ask and talk to the carers about the persons background and experiences, as this will give you vital clues to any diagnosis.

24. Mental Health Problems with LD…Detection Cont’d A comparison of those adults in the general population with people with LD

25. Mental Health Detection in People with LD – Some Possible Symptoms • Social isolation or marked withdrawal (unusual for the person) • Odd/bizarre behaviour • Biological changes - sleep disturbance/poor appetite/weight loss • Anxious, worried, preoccupied, agitated or perplexed mood • Talk content preoccupied • Conversation bizarre and disjoined/disorganised • Speech changes i.e. rapid, slurred • Loss of usual interpersonal skill, social skills & ability to learn new skills • Paranoia/unusually very suspicious • Avoidance of situations & people

26. Mental Health Detection in People with LD – Some Possible Symptoms Cont’d • Aggressive/argumentative/non-compliant • Destructive to property • Low impulse control, compulsive/impulsive • Mood Swings • Feeling stressed/cannot cope/feels different • Personal hygiene poor/self neglect • Feelings of severe anxiety, despair, loneliness, unworthiness & rejection • Delusions - false belief • Self injury or increase in usual self harming behaviour • Evidence of suicidal ideas/intent/acts • Compulsion or rituals • Hallucinations (visual/auditory) & evidence of responding to these

27. Physical Health Problems for People with LD People with LD often do not seek out healthcare, and when they do they frequently face difficulties, but ironically they are more prone to a range of physical problems than others. People with LD are less likely to receive health checks and access to routine screening, e.g. cervical screening.

28. Risk of Abuse Individuals with a LD are at an increased risk of being abused and neglected. Research has indicated that between 8% and 58% of adults with LD have experienced sexual violence. Adults with LD are less likely to report crimes of abuse perpetrated against them, and if they do they are less likely to achieve justice. For many, the violation of their human rights is seen as a normal part of their everyday lives. As part of our roles as healthcare professionalswe need to be actively aware of this and you should know what to do if you are suspicious that abuse may be occurring.

29. Risk of Abuse Cont’d • For adult referrals follow the link: • http://www.onesuffolk.co.uk/safeguardingadults/referralform/ • Staff must report the referral to their line manager and complete an SCH incident form • For childrens referrals, staff should follow the flowchart at: • http://nww.suffolkch.nhs.uk/LinkClick.aspx?fileticket=F8c7UO7QS3Y%3d&tabid=221&mid=1003 • We have a capacity assessment for patients with learning disabilities within the dental department: • http://nww.suffolkch.nhs.uk/LinkClick.aspx?fileticket=ukanLQ1_47s%3d&tabid=244&mid=1057 • and SCH procedure (multiagency) is at: • http://nww.suffolkch.nhs.uk/LinkClick.aspx?fileticket=o22liHfEvh0%3d&tabid=160&mid=506

30. What you can do to Support People with LD Things to remember: • Be aware of any special needs, such as sensory impairment • Put information in an accessible format • Carry out assessments in familiar settings • Minimise distractions • Be aware of the persons attention span and act accordingly • Use open ended questions • Ensure your conversations are jargon/terminology free • Use concrete terms There are many ways you can help people with LD, particularly when they are using our services. Just taking more time and being more observant can make a big difference in helping the person feel more relaxed and comfortable. Also to think about the diagnosis carefully, taking into account the LD factors that can skew the information.

31. Did you Know? The foundation for people with learning disabilities • http://www.learningdisabilities.org.uk/help-information/forums/ Has forums dedicated to connecting people who work with those with learning disabilities

32. Further Support/Information for You • The following link gives guidance on the formatting of written info for learning disabilities: http://www.brightpart.org/documents/communicate/Devon%20-%20total_communication_literature_-_guidelines-2.pdf • The East of England SHA plan to improve access to health services across the region for patients with learning disabilities and are working with PCTs/CCGs and Local Authorities. https://www.eoe.nhs.uk/page.php?page_id=2123

33. External Resources (Documents) • Valuing People - A New Strategy for LD for the 21st century. Department of health (2001) http://www.archive.official-documents.co.uk/document/cm50/5086/5086.pdf • Valuing People Now - A three-year strategy for people with learning disabilities - Department of health (2009)http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_093377 • Equality & Human Rights Commission. Call 0845 604 6610 or visit:www.equalityhumanrights.com • MENCAP. Call 020 7454 0454, email: www.mencap.org.uk • Foundation for people with LD. Visit: www.learningdisabilities.org.uk • LD email network - for anyone interested in the mental health needs of people with LD. Free to join, go to http://www.learningdisabilities.org.uk/ldhn/ • British Institute of LD. Call: 01562 723010 or visit http://www.bild.org.uk/ • Clear Thoughts http://www.clearthoughts.info/

34. USEFUL LINKS • http://www.nhs.uk/livewell/childrenwithalearningdisability/pages/childrenwithalearningdisabilityhome.aspx • http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Whatislearningdisability.aspx • http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Copingwithdiagnosis.aspx • http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/reallifesinead.aspx • http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Reallifemichael.aspx • http://www.mencap.org.uk/all-about-learning-disability/information-professionals