Directed Enhanced Services:

1. Directed Enhanced Services: Guidance to ensure delivery of effective Primary Health Care to people with a Learning Disability Kay Graham and Trish Bailey Community Team Learning Disabilities

2. WHAT IS A LEARNING DISABILITY? • A reduced ability to understand new or • complex information • Learning new skills can take longer • Impaired intelligence and intellectual • functioning • A reduced ability to cope independently • Impaired social functioning • Difficulties started before adulthood with • a lasting effect on development

3. ICD 10 Definition • Mental Retardation is defined as a condition of arrested or incomplete development of the mind, which is characterised by impairment of skills manifested during the developmental period, which contribute to the overall level of intelligence, e.g. cognitive, language, motor and social abilities.

4. What is a Learning Disability? • Learning disability is the official term used in the UK to describe people who suffer significant disabilities in their day-to-day lives as a result of an impairment in intellectual functioning. Its onset is before birth or during infancy, childhood or adolescence. • This therefore excludes by definition: people who suffer restricted intellectual functioning with an onset in adulthood because of head injury or dementia; and people whose intellectual functioning is impaired on a transient basis because of a mental illness (although people with a learning disability may also suffer from a mental illness).

5. Assessing for a Learning Disability • Learning disability is usually defined by a combination of IQ tests and measurements of ‘adaptive behaviour’ (ability to carry out day-to-day tasks). • Several ways exist for categorising different degrees of learning disability, the descriptions on the next slide are based on the definitions used by the World Health Organisation. However, these categories are not discrete groups, and many individuals have particular skills in some areas. Careful assessment is therefore required to identify each individual’s abilities, which should take account of other disabilities, sensory impairments, and psychiatric disorders.

6. Categories of Learning Disability

7. Direct Enhanced ServicesAim of the Presentation • To give you an understanding of the Direct Enhanced Service (DES) for the delivery of effective Primary Health Care for people with a Learning Disability. • 2013/14 general medical services (GMS) contract:- Guidance and Audit requirement for new and amended services (Sept 2013) • To inform you of the Local and National findings that led to the need to address the health needs of people with a learning disability in this way. • To offer advice and guidance as to how the DES can be met in partnership with other agencies

8. Issues to Consider • It is estimated that about 2.2% of the general adult population have a learning disability. (Emerson and Hatton 2006) • The report on Health Inequalities and People with Learning Disabilities in the UK: 2010,states that people with a Learning disability are: • Fifty eight times more likely to die prematurely than the general population. • Three times more likely to die of respiratory disease. • Twenty times more likely to have epilepsy. • Four times more likely to die from a preventable death. • Likely to have 2.5 times more health problems than the general population. • Significantly more likely to have physical disabilities, such as hearing and visual impairment, or chronic conditions such as chronic heart disease. • Sixty five per cent more likely to be obese. • • Almost twice as likely to be admitted to hospital in any one year.

9. Further issues:- A significant number of people with a learning disability do not access local health care services due to a variety of difficulties attributed to their learning disability Minor health problems that may have the potential to develop into more serious conditions can go undiagnosed until the individual suffers unacceptable pain and discomfort People are known to visit their GP at a lower rate than the general population but have a raised incidence of admission to accident and emergency services (Facing the Facts, 1999)

10. The requirements for taking part in the enhanced • service are as follows: • The practice will liaise with their Local Authority to share and collate information, in order to identify the patients on their practice list who are known to social services primarily because of their learning disability in order to establish a 'health check learning disability register'. • They will then ensure that each of these patients are placed on their QOF learning disability register (LD001) • The practice providing this service will be expected to have attended a multi-professional education session:- • The minimum expectation of staff attending will include the lead general practitioner • (GP), lead practice nurse and practice manager/senior receptionist. Practices may also wish to involve specialist LD staff from the community learning disability team to • provide support and advice. • They will then offer a health check to those identified on their practice register.

11. National guidance relevant to the project • Department of Health (2001)Valuing People-A New Strategy for Learning Disability for the 21st Century • Mencap (March 2007) Death by Indifference. • Department of Health (2008) Health care for all: Report of the Independent Inquiry into access to health care for people with Learning Disabilities- Sir Jonathan Michael • Department of Health(2009) Valuing People Now: A New Three Year Strategy for People with Learning Disabilities. • Healthy Ambitions: Looks at the Challenges we face across Yorkshire and the Humber over the next Decade • Health Equalities Framework 2013

12. What is the DES? • This enhanced service is designed to encourage practices to identify their patients with a learning disability aged 18 and over with the most complex needs and offer them an annual health check. • They are to use the Local authority (LA) lists of people known to social services primarily because of their learning disabilities, to identify patients on their registers • to be offered the checks. • The rationale is to target people with the most complex needs and therefore at highest risk from undetected health conditions (usually people with moderate to severe learning disabilities). • Generally LA criteria for access to social care services are related to complexity • of need, although sometimes individuals with mild learning disabilities and other additional health needs, usually associated with mental health needs, will meet • social services eligibility criteria. • From the prevalence figures available, it is estimated that approximately 240,000 patients fall into this category across the country.

13. Previous Initiatives Undertaken • Tailor made screening clinics • Health garages:- local initiative including District, Health Visiting • and Learning Disability Nurses acting as the mechanics supporting • individuals to attend • Health promotion workshops:- Run by multi-agency professionals • from Health and Social Care • Service development through East Riding Health Authority for a • secondment of a health facilitator to work closely with Primary • Health Care Teams and Community Teams Learning Disabilities. • Research undertaken and a programme of health screening • developed • Development of Health Action Plans • Launch of the DES - Extended to March 2014

14. Barriers to Accessing Primary Health Care • Accessibility • Lack of Knowledge and Understanding • Health Screening • Resources and Facilities • Anxieties and Fears • Waiting

15. Accessibility Accompanied visits • With family member or social care staff (acknowledging the findings of Sir J. Michael (2008) “Making a Difference" in seeing family members as partners) • Followers or Leaders ? Manthorpe & Martineau (2010) Which looks at the role for Social Care Practitioners in annual health checks for adults with learning disabilities? Associated physical disabilities Transport Complicated telephone systems Physical access Times and availability of appointments Appointment cards and letters

16. Lack of Knowledge and Understanding • Communication • Associated Behaviours and Mental Health • Explanations • - Consent & Best Interest

25. Practical Exercise • If a person didn’t understand speech, which of the items on your sheet do you think would be helpful in finding out if they wanted a drink? • Number the items from 1-9; with the most helpful communication aid at number 1 and the least helpful number 9.

26. Exercise 1

27. Health Screening • Availability of Health Screening • Level of Health Screening • Consultation Time • Practicalities of Health Screening • Fear of Medical Procedures • Lack of Health Promotion Opportunities

28. Resources and Facilities Resources - local contacts, networks, practitioners with special interest and information. - Health Education packs/booklets Facilities

29. Anxieties and Fears • Waiting too long • Busy environment • The sound of buzzers and telephones ringing • Not knowing when it’s their turn • The smell of antiseptic • People at the surgery looking sad, worried or crying • Afraid of the unknown • Fear of injections or giving blood • Carers were afraid of others responses, worried about what • could be wrong and were concerned for the individuals comfort

30. Waiting • Bored and frustrated • People stared • Others lacked understanding • Overcrowded waiting area • Not enough room for wheelchair users • Pleased to find there were some special • arrangements made

31. What Should the Health Screening Tool Cover? Practices taking part in the enhanced service should base their health checks on the Cardiff Health check or a similar protocol Well person physical health check - identify and review chronic illnesses System review Monitor behaviour and mental health Epilepsy where relevant Signpost to national screening programmes Address syndrome specific issues Address health promotion/education opportunities Measurable - for both individual and service outcomes Relevant physical examinations Referral pathways Medication review Annually Acknowledge concerns of carer Consider transitional issues Ensure inclusion in National Service Frameworks and adhere to NICE guidance.

32. Pre-disposed Health Problems • There are some associated health problems that have a higher prevalence for • individuals with a learning disability as a result of genetic and socio-economic • factors. These include: • Heart Disease • Endocrine and Metabolic Disorders • Respiratory Difficulties • Eating and Swallowing Difficulties • Neurological Disorders • Cerebral Palsy • Sensory Impairments • Communication Problems • Cancers • Alzheimer’s Disease • Obesity • Underweight • Psychiatric illness • Behaviour Difficulties • Orthopaedic Problems • Mobility Difficulties • Medication Related Issues

33. Syndrome Specific Health Issues There are specific medical complications with syndrome specific conditions like:- Downs Syndrome Prader Willi Fragile X Syndrome Sturge Weber Phenylketonuria Neurofibromatosis Tuber sclerosis Foetal Alcohol Syndrome Autism

34. Autism and Learning Disability Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them. It is a spectrum condition, which means that, while all people with autism share certain areas of difficulty, their condition will affect them in different ways. Asperger syndrome is a form of autism. NAS website 2013

35. Anxiety What is Autism? Impairments of: Social Interaction Social imagination Routines Lifelong Social Communication Executive functioning Repetitive behaviours Sensory differences

36. Social Imagination Differences: • Hard to instinctively understand of other’s • mental state • Problems with time and consequences • Not able to predict other’s behaviour • Functional not imaginative play/actions • Difficulty imagining how things might be • different • Difficulty transferring skills

37. Social Interaction Differences • Limited instinctive understanding of other’s feelings • Limited in when (and how) to communicate their own • feelings • Different instinctive understanding of personal space • Using people as tools • Difficulty understanding social conventions (white lies) “People with autism follow an autistic social protocol not a neuro-typical social protocol.” Luke Beardon 2012

38. Social Communication Differences • Limited instinctive understanding of other’s interests • or topic • Difficulty taking turns • Literal understanding • Difficulty with non-verbal communication • (facial expression, body language, tone) • Difficulty with question words • Difficulty in processing language • May use behaviour to communicate • Difficulty with metaphors, jokes and sarcasm

39. These areas of difference are underpinned by sensory differences • Tactile • Proprioception • Hearing • Sight • Smell • Vestibular • Taste Differences can make people hyper aware, or under aware at any particular time or in any particular situation.

40. Repetitive and Stereotyped Behaviours Another important characteristic, in addition to the triad, is repetitive and stereotyped behaviours. People may be familiar with the image of children with autism obsessively lining up toys, repeatedly spinning objects or flapping their hands in the periphery of their vision. As development proceeds however, the focus of attention may shift from physical activities to the collection of information.

41. Strengths – Neuro-diversity, • not always a bad thing • Organised - systemising • Clear • Honest • Highly knowledgeable in their field • Visual skills • Accurate • Helpful • Resource centres for others • If a person with autism loves you – you will know it

42. Temple Grandin “I think in Pictures. Words are like a second language to me. I translate both spoken and written words into full-colour movies, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often find this phenomenon difficult to understand.”

43. Visual Supports People with LD/Autism can find the world chaotic and confusing. Visual supports help them make sense of the world. People with autism and often people with LD have strong visual skills and are good visual learners.

44. Visual Information can be… Objects Photographs Pictures/drawings Symbols Written words Technology

45. Top tips…..

46. Stuff • Don’t be surprised if the person with autism wants to play with or examine your instruments closely - remember, the last time they saw a doctor, that might have been allowed to help them relax, so they will expect it to be the same when they see you

47. Appointments • Try to give the patient with an ASD the first or last appointment of the day. People with an ASD find waiting around for an appointment extremely stressful. • Waiting in busy places will increase the stress levels of an already anxious child or adult.  • If possible, find a small side room the person can wait in.

48. Talking to People with ASD General Rules: Keep language clear and simple to a level each person can understand Use a quiet, calm voice – sharp voices only in emergencies Use the person’s name first to cue them in – and include them in the question, even if the carer may answer (If they hear their name in a conversation that does not include them they may become stressed) Instructions are best given one step at a time and by one person at a time – use a doll to demonstrate on Slow down and allow people more time to process language

49. People with an ASD tend to take everything literally. Thus, if you say "It will only hurt for a minute" they will expect the pain to have gone within a minute. • Make your language concrete and avoid using idioms, irony, metaphors and words with double meanings, e.g. “Pull yourself together." This could cause the patient to become confused. • Give direct requests, eg "Please stand up." If you say, "Can you stand up?" this may result in the person staying seated or the answer "yes", as the person with an ASD may not understand you are asking them to do something. • Check that they have understood what you have said - some people with an ASD may speak clearly but can lack full understanding. • Avoid using body language, gestures or facial expressions without verbal instructions. These may not be understood. • Ask for the information you need. A person with an ASD may not volunteer vital information without being asked directly

50. Response by patient • Don't be surprised if the patient doesn't make eye contact, especially if he or she is distressed. Lack of eye contact does not necessarily mean they are not listening to what you are saying. • Allow the patient extra time to process what you have said. • Don't assume that a non-verbal patient cannot understand what you are saying. • People with an autistic spectrum disorder find it difficult to understand another person's perspective. They may not understand what you intend to do, but may expect you to know what they are thinking. • People with an ASD may not understand personal space. They may invade your personal space or need more personal space than the average person.