The Learning Disability Nurses vital contribution – how, why what and when?
Dr Michael Brown, Lecturer, Edinburgh Napier University & Nurse Consultant, NHS Lothian
Aims of the presentation
• Evidence of health needs of people with learning disabilities
• Leaders in learning disability nursing• Opportunities and challenges for the future
Legislative Frameworks
• European Convention of Human Rights
• Disability Discrimination Act
• Mental Capacity Act
• Mental Health Act
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
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
Wider issues – Poverty & learning disabilities
‘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
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
Physical Health
A different patter of physical health than the general populationMortality profile different from the general populationDiagnosis a problemHigh levels of unmet health needs
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
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
The Evidence . . .
Respiratory disease
Commonest cause of death
Pneumonia and gastric aspiration (swallowing, GORD, Down’s syndrome)
The Evidence . . . .
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 . . .
Gastrointestinal
disordersGastric Oesophageal
Reflux Disorder - ‘GORD’
Helicobacter pyloriConstipationSwallowing problems
The Evidence . . . .
Epilepsy1-2% in general population25% + in learning disability
populationPrevalent, multiple seizure
types, complex
InjuriesIncreased mortalityCo morbiditySeizure management
The Evidence . . . Cancer
Different pattern of malignancy:
lower level of lung, prostate and urinary tract cancershigher levels of oesophageal, stomach and gallbladderLeukaemia and Down’s syndrome Lower ranked as cause of mortality
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
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• TOTAL 240 113
Causes of Death
Causes of death
1. Cancer2. Ischaemic heart disease3. Stroke
1. Respiratory disease2. Congenital heart disease3. Cancer
Types of malignancy
Lung and bronchus
ProstateBreast
OesophagusStomachGall bladder
Management of health needs
Health screeningLow 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
Common health needs
Learning DisabilityAutism Spectrum DisorderCommunication disordersRespiratory diseaseCardiovascular diseaseMental illnessDementiaChallenging behavioursCancers and many others…….
What the evidence tells us…
Pre term infants with multiple disabilitiesFoetal alcohol syndrome disorderADHDAutism Spectrum DisorderIncreasing numbers of people with complex physical disabilitiesIncreasing numbers of older people with complex needs and end of life care needsChanging demographic phenomenon Therefore increases at both ends of the lifespan
Political leaders
Images of nursing leaders
Popular nursing images
“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?”
Leadership with purpose
Leadership with purpose
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
Enabling care
Effective programme of screening – partnership between users, primary care & learning disability services Personal care programmes to enable self-careAssessment, treatment & support to manage long-term conditionsAccessible health promotion informationPatient-held health recordsEducation, development and support of carers, social care professionals and other on health needsEvidence-based nursing practice
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
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.
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
“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
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