aims of the presentation

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

Contact details

Michaelj.brown@nhs.net