Aims of the presentation

1. The Learning Disability Nurses vital contribution – how, why what and when?Dr Michael Brown, Lecturer, Edinburgh Napier University & Nurse Consultant, NHS Lothian

2. Aims of the presentation Evidence of health needs of people with learning disabilities Leaders in learning disability nursing Opportunities and challenges for the future

3. Legislative Frameworks European Convention of Human Rights Disability Discrimination Act Mental Capacity Act Mental Health Act

4. Context of healthcare Protecting the Human Rights of People with learning disabilities as equal citizens The findings of House of Lords and House of Commons Enquiry, A Life Like Any Other? Human Rights of Adults with Learning Disabilities (2008) Mencap Death by Indifference (2007) Investigations and service failures – Cornwall, Sutton and Merton, general hospital issues and others…. Challenging institutional discrimination within healthcare Limited knowledge of health needs of people with learning disabilities Failures in healthcare systems and Duty of Care Education and development Workforce development

5. Death by Indifference • Significant failures in safeguarding • Serious service and system failures • Avoidable deaths • Poor practice & care • Failure to adhere to legislation • In short, indifference

6. ‘Poverty can increase the risk of a child having an impairment… Having a disabled child can also mean that parents find it harder to maintain full-time employment, their housing can be inadequate for their child’s needs, and expenditure on basic needs is increased.’ Prime Minister’s Strategy Unit, 2005 Wider issues – Poverty & learning disabilities

7. People with Learning Disabilities – The Changes Changing demographics of the learning disability population is an international phenomenon and issue 53% increase in ID 1960-1995 = 1.2% per annum Due to improved socio-economics Due to improved intensive neonatal care

8. Physical Health A different patter of physical health than the general population Mortality profile different from the general population Diagnosis a problem High levels of unmet health needs

9. Mental health A different pattern of mental ill health from the general population Dementia more prevalent Schizophrenia common Depression & anxiety disorder common Lower levels of suicide High levels of unmet need Autism Spectrum Disorder common

10. The Evidence . . . Communication needs Number one Role of “total communication” Early intervention programmes help Over-estimation by paid carers Role of training programmes Accessible information required

11. The Evidence . . . Respiratory disease Commonest cause of death Pneumonia and gastric aspiration (swallowing, GORD, Down’s syndrome)

12. Cardiovascular Disease Second most common cause of death Congenital heart disease common- screening important Ischaemia common- no evidence to suggest falling rates - Obesity an issue - Causes of nutritional problems - ? Increase in Cardiovascular disease in ageing population The Evidence . . . .

13. Gastrointestinal disorders Gastric Oesophageal Reflux Disorder - ‘GORD’ Helicobacter pylori Constipation Swallowing problems The Evidence . . .

14. Epilepsy 1-2% in general population 25% + in learning disability population Prevalent, multiple seizure types, complex Injuries Increased mortality Co morbidity Seizure management The Evidence . . ..

15. Cancer Different pattern of malignancy: lower level of lung, prostate and urinary tract cancers higher levels of oesophageal, stomach and gallbladder Leukaemia and Down’s syndrome Lower ranked as cause of mortality The Evidence . . .

16. New Health Needs in One Year Period Cases Controls • Infection 4 4 • Neoplasm 1 0 • Endocrine & metabolic 6 7 • Mental disorders 21 5 • Nervous system 10 1 • Eye 21 13 • Ear 26 6 • Circulatory 15 1 • Respiratory system 8 9

17. New Health Needs in One Year Period Cases Controls • Digestive system 26 14 • Skin 9 8 • Musculoskeletal system 16 8 • GU system 8 2 • Congenital 2 0 • Symptoms 44 20 • Injury, poisoning 16 14 • External causes 7 1 • TOTAL240 113

18. Causes of Death Types of malignancy Lung and bronchus Prostate Breast Oesophagus Stomach Gall bladder Causes of death 1. Cancer 2. Ischaemic heart disease 3. Stroke 1. Respiratory disease 2. Congenital heart disease 3. Cancer

19. Health screening Low uptake of national programmes for the whole population – cervical & mammography Incremental Enhanced Service Model development A case for systematic screening established Partnership approach vital Learning Disability Nursing contribution vital Management of health needs

20. Common health needs Learning Disability Autism Spectrum Disorder Communication disorders Respiratory disease Cardiovascular disease Mental illness Dementia Challenging behaviours Cancers and many others…….

21. What the evidence tells us… Pre term infants with multiple disabilities Foetal alcohol syndrome disorder ADHD Autism Spectrum Disorder Increasing numbers of people with complex physical disabilities Increasing numbers of older people with complex needs and end of life care needs Changing demographic phenomenon Therefore increases at both ends of the lifespan

22. Political leaders

23. Images of nursing leaders

24. Popular nursing images

25. “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be?”

26. Leadership with purpose Leadership with purpose

27. We all need to be leaders • - Improve health and wellbeing • - Inspire a shared vision • - Model the way forward • - Challenge the process • - Enable others to act • - Encourage the heart Kouzes & Posner, 1997

28. Enabling care Effective programme of screening – partnership between users, primary care & learning disability services Personal care programmes to enable self-care Assessment, treatment & support to manage long-term conditions Accessible health promotion information Patient-held health records Education, development and support of carers, social care professionals and other on health needs Evidence-based nursing practice

29. General hospital Issues “People with learning disability may be more at risk of things going wrong than the general population, leading to varying degrees of harm being caused whilst in general hospitals” (National Patient Safety Agency, 2004 p.11) • Evidence of high health needs and increased admissions yet shorter admission periods • Diagnosis a problem • Issues relating to challenging behaviours and communication • Challenges of detecting pain and distress in people with ID • Limited education and experience on the needs of people with ID for general health professionals • Consent to treatment can be a significant issue

30. A model of Liaison Nursing Practice • Learning Disability Liaison Nursing (LDLN) Services have been recommended in policy and are being developed across the United Kingdom. • First Mixed Methods research study published in 2010 focussing on outcomes from 4 Liaison Nursing Models. • The first study to examine LDLN Services from a range of stakeholder perspective and demonstrates evidence of the impact and outcomes. • The LDLN role is complex and multi-dimensional and impacts on (i) clinical care, (ii) education and practice development and (iii) strategic developments.

31. Some of the challenges Developing services within financial resources Peer support & professional networks Changing policy landscape Pace of reform and service redesign Critical scholarly activity Achieving the breadth & depth of role required Generalist v specialist Scope of practice and role development now and for the future Reducing role ambiguity

32. “Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”Barack Obama

33. And finally … The true test for Learning Disability Nurses and their contribution as leaders is to improve the health and wellbeing of the people with learning disabilities Michael Brown 2010

34. Contact details Michaelj.brown@nhs.net