Learning Disability Awareness

1. Learning Disability Awareness Lesley Eccott Community Learning Disability Nurse

2. Agenda • Definitions & Statistics • Health Issues / Inequalities • Communication Issues • Mental Capacity Act (2005, 2009) • Consent Issues • Steps to consider for admissions related to the learning disabled population • Discharge Planning • Outpatients Lesley Eccott

3. Definition of Learning Disability • A state of arrested or incomplete development of the mind • Significant impairment of intellectual functioning • Significant impairment of adaptive / social functioning These impairments / difficulties are present from childhood, not acquired as a result of accident or following onset of an adult illness. WHO 1992 (World Health Organisation) Lesley Eccott

4. Classification of Learning Disability WHO (1992) ICD 10 (International Classification of Disease) ¹Defined LD as: • Mild – IQ 50-70 Effective communication / literacy skills, independent in self care, maintain relationships / job • Moderate – IQ 35-49 Slow comprehension, supervision to self care • Severe – IQ 20-34 Marked cognitive impairment, damage to the CNS, limited communication, inability to self care • Profound – IQ less than 20 Severe cognitive delay, immobility / restricted mobility, incontinence, requiring full support Lesley Eccott

5. Statistics • Approximately 210,000 people have severe/profound Learning Disabilities in England • 1.2 million people have mild/moderate learning disabilities in England Valuing People (2001) Local Figures based on the Community Nurse LD database Adults = 620 approx Children = 131 approx This doesn't include all people that are active cases for the LA & some that maybe known to GPs and not our service Lesley Eccott

6. Health Issues for people with learning disabilities Evidence shows that people with learning disabilities: • Increased mortality than non-disabled population • Often have disease that goes undiagnosed • Raised prevalence rates of (Psychiatric illness, Epilepsy, Obesity, Sensory impairments, Gastrointestinal disorders, Cancers, Cardiovascular disease, Respiratory disease and dementia) Mencap (2007), Hollins et al (1998), Michael J (2008)¹¹ Lesley Eccott

7. Health differences / Inequalities As a result of these health issues people with Learning Disability have an increased risk of: • Preventable deaths are 4 x higher than the general population • 58 x more likely to die before the age of 50 • 3x more likely to die from respiratory disease (46% vs 15-17% of the general population) • Women are less likely to access screening Breast 43% vs 57% Cervical 19% vs 77% • Approx 80% do not take enough exercise Lesley Eccott

8. Why these inequalities exist Organisational Barriers • Time constraints within appointments • Accessible information • Consent issues • Inter-professional collaboration • Inequalities in access to health promotion and screening services • Inadequate screening Client Issues • Communication Difficulties • Inability to explain symptom profiles • Fear of medical intervention / non compliance • Inability to understand risks / benefits of treatment / investigation DoH (2001)³, Baxter & Kerr (2002)4, Disability Rights Commission (2006)5 Lesley Eccott

9. Communication difficulties & the impact it can have on history taking • Lack of health history (frequent move of residence, lack of documentation, inability to articulate accurate symptom profiles) • Factors associated with the Learning Disability: • Cognition • Expression of illness • Response to pain • Judgmental remarks/negative assumptions • “Has always hit his head” (dental decay, impacted ears) • Nature of the information available. Often you are relying on second or third hand accounts. Often accounts may vary from one carer to another • This leads to conflict of ideas and opinion Lesley Eccott, CLDN

10. Communication Issues How to overcome communication barriers: Proactively look at the organisational barriers (time apt, menus, signage, pre-visits to ward area, level 1:1 support) Provide alternative methods of communication Assess the Individual’s ability to communicate Multidisciplinary working, ask carer for communication passport, request pic symbol books if used. Identify a key worker from home and ward Make reasonable adjustments to custom practices (paraphrasing, providing explanation in various formats, apt times) Lesley Eccott

11. Communicating need Points to Remember - people with Learning Disabilities may have difficulty expressing their needs, such as : • hunger • thirst • pain • distress • toilet and washing requirements and basic care needs staff should anticipate these needs, involve the carer / guardian assess non verbal signals and meet health need Lesley Eccott

12. Mental Capacity Act • Provides a legal framework to protect vulnerable people who lack capacity to make decisions • It helps people to take part in the decision making process (Mental Capacity Act, Code of Practice 2007) • Under the Act it is now a criminal offence to neglect the needs of people who lack capacity. This could lead to imprisonment if medical or physical needs are ignored for example: failing to provide healthcare, withholding medications, food or drink) Lesley Eccott

13. Consent & Mental capacity issues The five principles are: - • A presumption of capacity (every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise) • The right for individuals to be supported to make their own decisions (people must be given all appropriate help before anyone concludes that they cannot make their own decisions) • Right to make what appears to be seen as eccentric or unwise decisions • Best interest (anything done for or on behalf of people without capacity must be in their best interest) • Least restrictive of their basic rights and freedoms (anything done for or on behalf of people without capacity must be in their best interest and be least restrictive) The Mental Capacity Act (2005) Lesley Eccott

14. Points on consent to be considered prior to admission / treatment • Seek / assess whether the individual has the capacity to consent to treatment • Record this in accordance with the Mental Capacity Act • If unable to consent, there needs to be clear evidence recorded as to what has been done by the Hospital, Family, Carers, MDT to help the individual understand what is required and therefore give informed consent • If it is felt that having done this the individual is unable to give consent then a best interest decision is made • Best Interest decisions need to be formally recorded in a meeting with relevant people (IMCA where there's no family involvement, Family, GP opinion, LA, CLDN) • The Decision Maker defaults to the person carrying out the procedure Mental Health Act 1983 (Part 1V Treatment ) Reference guide to consent for examination DoH 2001 http://valuingpeople.gov.uk/dynamic/valuingpeople118.jsp Lesley Eccott

15. Steps to consider for admissions related to the learning disabled population • Host pre-admission meeting for planned admissions (See checklist handout) • Provide picture of the ward area, proposed treatment, may reduce anxiety and promote understanding and may increase capacity • Use assessment information provided to make nursing care appropriate to need • Ensure the ward is informed and prepared prior to the admission • Make introductions to the patient carer and wherever possible have a named nurse for the duration of the admission • Explain the process Lesley Eccott

16. Steps to consider for admissions related to the learning disabled population • Complete risk / dependency and support assessments (agree if additional support is required for the individual) • Agree the attendance of the support worker / the person who knows the individual the best to attend the ward round and provide vital feedback on how they feel the individual is • Request copies of Care Plans / Health Action Plans / Communication Passports Lesley Eccott

17. During the hospital admission • Continually explain the procedures, medication, changes in condition / treatment • Check the level of understanding from the patient and carer perspective (capacity / consent) • Document clearly the responses • Include individual, family / carer, Care Manager, Community Learning Disability Nurse as appropriate in the decision making process • Reassess the need for 1:1 support / increased support needs and negotiate this with the ward manager Lesley Eccott

18. Environmental considerations • Assess the clinical and individual needs for a single cubicle or ward bay • Some people with a Learning Disability will be more comfortable being cared for alongside other people • Others may feel isolated and frightened in a single cubicle • Whereas others with complex needs or challenging behaviour will benefit from the quieter environment of a cubicle • Make sure that the environment is physically accessible and safe Lesley Eccott

19. Discharge Planning • As appropriate request a discharge planning meeting • Ask the LA to carry out an assessment of need if there has been a change in care needs • Arrange OT assessment and visits home with OT as required • Inform all of the community MDT involved with the individual of the imminent discharge • Provide copy of the discharge report to the individual, support worker, community MDT Lesley Eccott

20. Outpatients Clinics Some people with a Learning Disability may find these busy areas difficult and may become anxious Consider: - • Where appropriate offer the first clinic appointment • Some may require a double clinic time slot to support their consultation or at their pre-assessment appointment in support of their understanding and consent • Allow the individual time to explain themselves • Check the level of understanding • Avoid using medical jargon and consider using alternative words and explanations during their consultation • Try and perform all the necessary tests / investigations on the same day Lesley Eccott

21. What's happening at a local level GPs • Completing annual health checks Pre-assessment • Offer double apt as required • Joint work with CLDN team as required • Complete all tests at one apt • Assess need (consent, capacity, support required during hospital stay) Audiology • Hold a screening clinic for people with LD Community LD Team • Liaison with primary care and acute trust as required • Health screening / assessment • Offer support in the process of capacity and consent issues as required • Discharge planning as appropriate Lesley Eccott

22. Service user experience Lesley Eccott

23. ‘Oh No Not the Doctor’ DVD presentation Lesley Eccott

24. References • Valuing People support team www.vpst.org.uk • Mencap www.mencap.org.uk • National Access to Acute A2A www.nnldn.org/a2a • Working together http://www.hft.org.uk/p/4/121/working_together.html • Guidance and leaflets on consent to treatment for persons with learning disabilities are available atwww.dh.gov.uk and www.dhsspsni.gov.uk • Royal College of Nursing (2006) Meeting the health needs of people with learning disabilities: Guidance for nursing staff. RCN • The Clear Communication People Ltd. The Hospital Communication Book, version 2. Available from: www.communicationpeople.co.uk • Healthcare for All Sir Jonathan Michael - July 2008 • http://www.library.nhs.uk/learningdisabilities Lesley Eccott