learning from the past – setting out the future from the past –setting out the future an rcn...

Learning from the past –setting out the future:Developing learning disability nursing in the United Kingdom

An RCN position statement on the role of the learning disability nurse

Updated

March 2014

Learning from the past – setting out the futureAn RCN position statement on the role of the learning disability nurse

Royal College of Nursing (RCN) Learning Disability Nursing Forum

Professor Michael Brown (Chair), Nurse Consultant, NHS Lothian andProfessor of Health and Social Care Research

Professor Owen Barr, Head of School for the School of Nursing at Universityof Ulster

Anne Campbell, Operations Manager for Residential, Supported Living andRespite Learning Disability Services, Belfast Health and Social Care Trust

David Currie, Lead Nurse, covering Scotland and Northumberland for a national specialist third sector organisation

Simon Jones, Head of Behavioural Support, Care UK

Daniel Marsden, Practice Development Nurse with learning disabilities, East Kent Hospitals University foundation NHS Trust

Debra Moore, Group Director of Nursing, Quality and Governance, Danshell

Ann Norman, RCN Professional Adviser, Learning Disabilities and CriminalJustice

And:

Professor Ruth Northway, specialist adviser to the RCN Learning andDisabilities Forum, Professor of Learning Disability Nursing, University ofSouth Wales

The RCN Learning and Disability Nursing Forum would also like to thank thefollowing individuals for their contribution in developing the original edition:

Professor Owen Barr, Phil Boulter, Professor Barry Carpenter OBE, ProfessorBob Gates, Denise Kelly, Betty Kershaw, Ian Mansell and Beatrice Nyamande.

Contributors2014 updated edition

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The Royal College of Nursing (RCN) is the largest professional association fornursing in the UK. With around 415,000 members the RCN represents nurses andnursing, promotes excellence in practice and shapes health policies.

To deliver our mission we aim to:

• represent the interests of nurses and nursing and strengthen their voice locally,nationally and internationally

• develop nurses’ professional practice through education, building a resource ofprofessional expertise and leadership

• influence and lobby government and other stakeholders to develop andimplement policy that improves the quality of patient care, and builds on theimportant contribution of nurses, health care assistants and nursing students tohealth outcomes

• develop the science and art of nursing and its professional practice

• build a sustainable member-led organisation with the capacity to deliver ourmission and strategic objectives effectively, efficiently and in accordance with ourvalues

• support and protect the value of nurses and nursing staff in all their diversity andin all employment sectors.

The RCN makes the following pledge to people with learning disabilities:

• the RCN will, through its membership, seek to ensure that safe, human rightsbased practice is the top priority for nurses

• the RCN is committed to working with individuals, services and stakeholders toensure the necessary safeguards are in place across all practice settings thatenable safe practice and care

• the RCN recognises that vulnerability is a particular issue and concern for peoplewith learning disabilities and in this regard will, through the RCN LearningDisability Nursing Forum committee, seek to highlight issues and raise awarenessof the needs of this group within society

• the RCN will promote equality, diversity and the rights of people with learningdisabilities, and person-centred approaches to care

• the RCN is committed to working in partnership with people with learningdisabilities and their families and carers, to ensure needs are identified andeffectively met

• the RCN will inform, shape and influence learning disability policy in England,Scotland, Northern Ireland and Wales to improve the care and support of peoplewith learning disabilities

• the RCN will support and develop learning disability nurses to provide highquality nursing care, support their nursing practice development, and enablethem to act as leaders and professional role models.

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The population of children, adults and olderpeople with learning disabilities is increasing andchanging. Thanks to better neonatal care andimprovements in health and social care servicespeople with learning disabilities are living longerand into older age.

As a result of improved pre-term neonatal survivalrates, the diagnosis of rare syndromes andgrowing substance abuse among the population,the incidence of children and adults with learningdisabilities is increasing. Similarly, the incidenceof Foetal Alcohol Spectrum Disorder (FASD),Attention Deficit Hyperactive Disorder (ADHD)and Autism Spectrum Disorder (ASD) is alsohigher. This trend is being compounded by widerissues such as social disadvantage and poverty(Emerson and Hatton, 2007; Blackburn et al., 2010; McKay et al., 2010).

As a result there is a new and growing populationof children and young people living intoadulthood with a range of complex needs (Tyler etal., 2007). Collectively these issues are resultingin cohorts of children and young peoplepresenting with patterns of complex learningdisability unlike those previously experienced byexisting services. In the last five years this grouphas increased by 25 per cent and is anticipated toincrease a further 29 per cent in the next fiveyears.

In addition, a growing number of adults withlearning disabilities and associated health needsare living into older age (Torr and Davis, 2007).

As a consequence, the population of people withlearning disabilities is increasing at both ends ofthe age-continuum and all care services –whatever their focus – will experience moredemand from this group in the future (Emersonand Hatton, 2008; Parrot et al., 2008).

Examining the need

A growing research evidence base illustrates thehigh and unmet health needs experienced bychildren, adults and older people with learningdisabilities and the resultant impact on theirhealth care experience, quality of life andmortality.

Compared to the general population, people withlearning disabilities experience a different patternand higher frequency of health disorders (Cooperet al., 2004) that include a high prevalence ofrespiratory disease, as well as cardiovascular,gastric, neurological, haematological,musculoskeletal disorders, sensory impairments,and mental illness (NHS Health Scotland, 2004;Jansen et al., 2005; Disability Rights Commission,2006).

As a result it is common for people with learningdisabilities to present with multiple, layered,physical and mental health needs. When coupledwith issues relating to communication,behavioural challenges, autism spectrumdisorders, mental illness and early onsetdementia, this group experiences particularvulnerabilities when accessing and receivinghealth care (NHS Health Scotland, 2004; Kwokand Cheung, 2007). These needs createsignificant challenges not only for people withlearning disabilities, but for their families andservice providers too.

Recent investigations and inquiries haveidentified significant service and system failuresin both specialist health and general healthservices which have contributed to poor care andsupport for people with learning disabilities(Mencap, 2004; Healthcare Commission, 2006;Healthcare Commission, 2007; Mencap, 2007;Parliamentary and Health Services Ombudsman,2009).

These investigations and inquiries all highlightedthe need for education and development toensure that health care practitioners are aware ofthe needs of people with learning disabilities, andhave the knowledge and skills, or can gain accessto specialists who do, to provide person-centredcare that is appropriate to the needs of theindividual and their family.

Introduction


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Learning disability nursing in the UK

“Nursing is the use of clinical judgement in theprovision of care to enable people to improve,maintain or recover health, to cope with healthproblems, and to achieve the best possiblequality of life, whatever their disease or disability,until death.” (Royal College of Nursing, 2007)

The five defining characteristics as set out in theRCN Defining nursing publication (publicationcode 001 983, www.rcn.org/uk/publications)continue to be relevant in learning disabilitiesnursing today.

There have been significant changes anddevelopments in services for people with learningdisabilities over the past twenty years. Todaypeople with learning disabilities live in thecommunity and are supported to lead full andinclusive lives, with the full recognition thataccess to specialists with knowledge, skills andexperience of their range of health needs will benecessary for some.

Recognising the need for specialist support forpeople with learning disabilities, the RCNsupports the emergence of learning disabilitynurses and their important role in deliveringpatient-centred care (Royal College of Nursing,2007).

Learning disability nurses (LDNs) play a centralrole in the lives of people with learningdisabilities, particularly those with more complexcare needs. They do this in a range of ways,including:

� undertaking comprehensive assessments ofhealth and social care needs

� developing and implementing plans andprogrammes of care

� working in collaboration with otherprofessionals and disciplines to meet healthneeds and coordinate care

� providing nursing care and interventions tomaintain and improve health and promotewellbeing

� enabling equality of access and outcomeswithin health and social care services

� providing advice, education and support topeople with learning disabilities and theircarers throughout their care journeys

� providing education and support to promotehealthy lifestyles and choices

� providing education and developmentopportunities for other practitioners on theneeds of people with learning disabilities

� acting to safeguard and protect the rights ofpeople with learning disabilities when they arevulnerable and in need of additional support.


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The RCN Learning Disability Nursing Forum

The Royal College of Nursing is organised into 41professional nursing forums, each of which isstructured to give members the opportunity todevelop, contribute to, and lead cutting edgenursing practice that improves the delivery of carein a particular nursing speciality or area ofinterest.

The RCN Learning Disability Nursing Forum is ledby an expert committee, and is focused ondeveloping and improving nursing practice toenable nurses to address more effectively thehealth needs of people with learning disabilities.The committee, which is comprised of sevenmembers, coordinates a shared agenda in healthand social care settings across all four UKcountries.

To deliver this agenda the RCN Learning DisabilityNursing Forum committee works in partnershipwith other key stakeholders involved in improvingand shaping learning disability nursing practice.

For example, the RCN has worked with the UKLearning Disability Consultant Nurse Network, thePositive Choices Learning Disability StudentNurse Network, and the National Network ofLearning Disability Nurses (NNLDN). Thesecollaborations have brought about enhancedcommunication and proactive engagement andparticipation from all four UK countries.

Through its membership the RCN is aware of theissues and concerns experienced by learningdisability nurses (LDNs) and health care supportworkers across a variety of care settings. In 2010,members attending RCN Congress called forlearning disability liaison nurses to be employedin all general hospitals to help address theproblems of poor care experienced by somepeople with learning disabilities. This resolutionhas attracted significant media and publicattention.

To take this resolution forward, and to scope thefuture support needs of children, adults and olderpeople with learning disabilities, the RCNLearning Disability Forum recently co-hosted aUK-wide summit, inviting experts andstakeholders to identify the key issues andactions required now and in the future.


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The 2010 Learning Disability Nursing Summit

In June 2010,Professor Michael Brown, Chair ofthe RCN Learning Disability Forum committee andPhil Boulter, Chair of the UK Learning DisabilityNurse Consultant Network co-hosted the LearningDisability Nursing Summit in London.

The summit involved invited experts alongsidesenior learning disability nursing leads, policymakers, researchers and educators. The focus ofthe day was around three key strategic elements:

� education

� workforce

� leadership.

Issues relating to each of these key areas werediscussed and debated, and key actions andpriorities for the RCN were identified and agreed.

This position paper contains a summary of thekey issues identified and discussed at thissummit.

Education

There is a growing need for nurses in the field oflearning disability. This requirement needs to beset within the wider context of the care suchnurses provide, enabling health needs to beeffectively addressed across settings, bringingabout improved health outcomes and enablingsocial inclusion. The Nursing and MidwiferyCouncil (NMC) standards for pre registrationnursing programmes, issued in 2010, provide thebasis for the development and delivery ofcontemporary education programmes to preparethe learning disability nurse of the future (Barr,2009).

Nurses at both pre and post registration levelsmust be educated to make decisions aboutnursing care and support needs if they are toeffectively contribute to current and future servicedelivery across a range of care settings – hospitaland community based, as well as those outside ofspecialist learning disability services.

As services and the evidence base relating to thehealth inequalities and the interventions requiredby people with learning disabilities evolve, nurseswill need to keep their knowledge and skills up todate through reflective practice and a

commitment to personal learning. In addition, tobe safe and effective practitioners, nurses willneed to undertake ongoing accredited educationto ensure their skills remain ‘fit for purpose’(Nursing and Midwifery Council, 2008).

There will also need to be opportunities fornurses to build further on the knowledge andskills obtained within pre registration nurseeducation in order to develop areas of specialistpractice, characterised by ‘discretion in clinicaljudgement’ and with a continued emphasis onnursing knowledge, theory and skills (UKCC,2001).

Integral to the role of LDNs will be a wide range ofpractical clinical nursing skills necessary toassess and respond to the diverse range ofcomplex health needs experienced by people withlearning disabilities, and to deliver a person-centred approach to care and support.

As the academic level of nurse educationdevelops to degree level for all pre registrationnursing courses (with the consequent move to apost graduate level of post registration courses)the need for a continued commitment to practice-based learning must be continued and developed.The design, delivery and evaluation of pre andpost registration nursing learning opportunitieswill require the active collaboration ofpractitioners across all relevant professions in allpractice settings, as well as people with learningdisabilities, their families and carers, andeducators in higher education.

Education for nurses must recognise the inter-professional context within which LDNs provideservices. There is a need and an opportunity toprovide shared learning across professions at preand post registration level in higher educationand practice settings, and for students andpractitioners to undertake their professionaleducation and continue to meet the requirementsof their respective professional and regulatorybodies.

Key issues� Ensuring the on-going ‘fitness for purpose’ of

the learning disability nursing workforce forthe future.


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� education and practice.

� Structuring pre and post registrationeducation programmes on the evidence ofhealth needs now and in the future.

� Setting out the distinct contribution ofregistered LDNs and health care supportworkers to improving health and wellbeing forpeople with learning disabilities now and inthe future.

The ways forward

� National and local action to develop andenhance practice-based learning opportunitiesthat support evidence-based nursing practice.

� National and local action to develop andenhance post registration learningopportunities for LDNs and health caresupport workers which reflect the changingand evolving roles required to meet the needsof people with more complex care needs in thefuture.

� Build on the NMC’s pre-registrationproficiencies to develop evidence-basedcurricula for the future.

Workforce

Learning disability nurses currently practice in awide and diverse range of organisational settingsthat include the NHS, local authorities and thethird sector, and it is clear that they will face newchallenges to their future roles (Alaszewski et al.,2001).

The changing demographics of children, adultsand older people with learning disabilities meansthe learning disability nursing workforce of thefuture will work with growing numbers of peoplewith a range of complex health needs.

Central to this challenge will be theunprecedented changes that take place in theconfiguration of services and support for peoplewith learning disabilities and their families. Thesechanges will dictate a range of new roles forlearning disability nurses across the UK, forexample, supporting and facilitating health carein general hospitals, providing psychosocial

interventions for those with mental illness, andworking with colleagues in primary care to enablehealth screening.

In the future LDNs will practice within child andadolescent mental health teams with greaterfrequency and support people with learningdisabilities in behavioural distress. Otherdevelopments will see LDNs take on other roles,becoming custody nurse practitioners orpractitioners within forensic services.

Community learning disability nurses are alreadydeveloping new and specialist areas of practicesuch as sexual health, epilepsy, challengingbehaviour, early onset dementia, and end of lifecare, while maintaining a core learning disabilitybackground to their practice (Gates, 2009).

To ensure there are adequate learning disabilitynurses to meet future needs, strategic workforceplanning must take account of future needsacross the NHS, social care, and third sectors.However, currently workforce planning is typifiedby an uncoordinated reduction in the number ofuniversities providing the learning disabilitynursing programme across the UK, and limitedand uninformed workforce development andcommissioning in the context of a burgeoninglearning disabilities population.

To deliver the evolving personalisation agendathere will be a growing need for a specialistlearning disability NHS workforce, and the largestsingle component of this workforce will be LDNs(Gates, 2009).

The future specialist workforce needs to bestrategically commissioned, and this is bestachieved through stronger and more transparentalliances between those charged withcommissioning learning disability nurseeducation programmes on behalf of the NHS(Gates, 2010). In particular, the NHS needs toacknowledge and fulfil its statutory responsibilityto undertake planning that takes account of theworkforce needs of the third sector, and to ensurethat the wider NHS workforce is properlyprepared to meet the needs of people withlearning disabilities and their families (Barr andGates, 2008).


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Key issues� Education commissioning needs to support a

flexible practice learning that is reflective oflocal workforce requirements.

� The effective evidence-based commissioningof pre and post registration learning disabilitynurse education across the four countries ofthe UK.

� Effective workforce modeling across health,social care and third sectors is needed to identifyfuture registered nurse learning disability (RNLD)requirements now and in the future.

The ways forward� Partnership working with the health

departments of the four countries of the UK toillustrate the role and contribution of learningdisability nursing to improving health andwellbeing, which in turn enables the socialinclusion of people with learning disabilities.

� National work needs to be undertaken by eachUK country as a matter of priority to profile theexisting learning disability nursing workforceand identify future requirements.

� Effective workforce planning partnerships –involving the NHS, social care and third sectorproviders – need to be established withplanners, commissioners and educators toensure an effective learning disability nursingworkforce.

� The range of future employment opportunitiesfor learning disability nurses, in the context ofincreasingly complex care needs, need to beset out and mapped.

Leadership

Learning disability nursing needs effective leadersto influence and inspire practitioners and ensuretheir knowledge and skills are maximised, andinform others of the professional and educationneeds of this part of the workforce (Faugier, 2005;Department of Health, 2006).

However, the changing pattern of service deliveryhas led to a lack of focus on the need for effectiveleadership to ensure the professional

development needs of LDNs are identified andmet wherever they practice – be it in the healthservice, social care or third sector settings. As aresult, networks are playing an increasinglyimportant role in enabling LDNs to develop,communicate, and share nursing practice.Leadership is required to ensure these networksfunction effectively and successfully (Horan andBrown, 2009a).

Learning disability nursing practice has been atthe forefront of leading new ways of working,service change and redesign. With an ageinglearning disability nursing workforce, however,there is a need to ensure strategic influencing andleadership skills are developed and enhanced forthe future.

As service models continue to evolve there will bea pressing need to support the development ofleaders in learning disability nursing, withnetworking opportunities playing an importantrole (Horan and Brown, 2009). Ultimately, thefuture delivery of consistent and high quality careand support for people with learning disabilities,and their families and carers, will depend onhighly effective succession planning (Northway et al., 2006).

Many LDNs have the personal qualities to take onleadership roles. To fulfil this potential, LDNsneed to develop the necessary skills, includingpolitical influencing skills, to enhance servicesnow and in the future.

However, changing service models have resultedin a reduction in local, regional and nationalleadership roles and opportunities for learningdisability nurses. All of which impacts on theability of LDNs to prepare for the all importantfuture strategic leadership roles from which theycan effectively campaign on behalf of people withlearning disabilities, and provide a strong voicefor LDNs.

Key issues

� The reduction in strategic leadership roles inlearning disability nursing.

� Identification of the career developmentopportunities in the third sector.


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Action plan

Building on the RCN Learning Disability NursingSummit, and the views and concerns expressedby other stakeholder organisations and RCNmembers, this paper captures the areas ofpriority that require action.

The RCN Learning Disability Forum, incollaboration with the UK Learning DevelopmentConsultant Nurse Network, will take the lead onbehalf of members in the following areas:

Education

1. The RCN Learning Disability Forum, incollaboration with other identified forums, willwork in partnership with the Nursing andMidwifery Council to ensure the learningdisability component of all pre-registrationnursing programmes is fit for purpose.

2. Working with the RCN Education Forum andadvisor, the RCN Learning Disability Forum willcollaborate with education providers to reviewcontinuing professional development (CPD)opportunities for learning disability nurseswherever they may practice.

Workforce

1. The RCN Learning Disability Forum will scopelearning disability nurses (currently orpreviously registered) wherever they practiceto establish an accurate workforce profile.

2. Working with key partners, the RCN LearningDisability Forum will develop an evidence baseof the outcomes of learning disability nursingpractice.

Leadership

1. Work with the RCN Leadership andManagement Forum and advisor to provideleadership opportunities for learning disabilitynursing.

2. Profile leaders in learning disability nursingwherever they may practice.

� Establish effective leadership and professionalsupport wherever learning disability nursespractice.

� Ensure strategic leadership for all LDNs withinthe mixed care economy.

� Develop and utilise learning disability nursingnetworks across the UK to promotecommunication, professional developmentand support.

The ways forward� Support the development of leaders in

learning disability nursing throughout the UK.

� Profile the role and contribution of leaders inlearning disability nursing throughout the UK.

� Support the development of leadership forlearning disability nurses practicing in theprivate sector.

� Promote the participation of learning disabilitynurses in leadership programmes anddevelopment opportunities.


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References

Alaszewski A, Gates R, Ayer S, Manthorpe G andMotherby E (2001) Education for diversity andchange: ENB research highlights, London: EnglishNational Board for Nursing, Midwifery and HealthVisiting.

Anderson P and Doyle LW (2008) Cognitive andeducational deficits in children born extremelypreterm, Seminars in Perinatology, 32 (1), pp.51–58.

Barr O and Gates B (2008) Education for thefuture: the changing face of education for staff,Tizard Learning Disability Review, 13 (1), pp.18-27.

Barr O (2009) Learning disability nurse education:an opportunity to contribute to shaping thefuture, Journal of Intellectual Disabilities, 13 (3),pp.179-182.

Blackburn C, Carpenter B and Edgerton J (2010)Shaping the future for children with foetal alcoholspectrum disorders, Support for Learning, 23 (3),pp.139-145.

British Medical Association (2007) Foetal alcoholspectrum disorders: a guide for healthcareprofessionals, London: BMA.

Cooper SA, Melville C and Morrison J (2004)People with intellectual disabilities: their healthneeds differ and need to be recognised and met,British Medical Journal, 239, pp.414–415.

Department of Health (2006) Modernisingnursing careers: setting the direction, London:DH.

Disability Rights Commission (2006) Equaltreatment: closing the gap. A formal investigationinto physical health inequalities experienced bypeople with learning disabilities and mentalhealth problems, Stratford upon Avon: DRC.

Emerson E and Hatton C (2007) Poverty, socio-economic position, social capital and the healthof children and adolescents with intellectualdisabilities in Britain: a replication, Journal ofIntellectual Disability Research, 51 (11), pp.866–871.

Emerson E and Hatton C (2008) Estimating futureneed for adult social care services for people withlearning disabilities in England, Lancaster:Institute for Health Research, LancasterUniversity.

Faugier J (2004) The predictions of nursingleaders, Nursing Times, 100 (4), pp.20-21.

Gates B (2009) The valued people project: reportof a strategic review of educationalcommissioning and workforce planning inlearning disabilities, Newbury: South CentralStrategic Health Authority.

Gates, B (2010) When a workforce strategy won’twork: Critique on current policy direction inEngland, UK. Journal of Intellectual Disabilities, 14(4), pp.251-259.

Healthcare Commission (2006) Joint investigationinto services for people with learning disabilitiesat Cornwall Partnership NHS Trust, London:Healthcare Commission.

Healthcare Commission (2007) Investigation intothe service for people with learning disabilitiesprovided by Sutton and Merton Primary CareTrust, London: Healthcare Commission.

Horan P and Brown M (2009a) Networking inintellectual disability nursing: an internationalperspective, London: National Networks ofLearning Disabilities Nurses.

Horan P and Brown M (2009b) An internationalevaluation of networks and networking inlearning disability nursing, Journal of LearningDisability Practice, 12 (8), pp.32–37.

Jansen D, Krol B, Groothoff J and Post D(2005)People with intellectual disability and theirhealth problems: a review of comparative studies,Journal of Intellectual Disability Research, 48 (2),pp.93–102.

Kwok H and Cheung P (2007) Co-morbidity ofpsychiatric disorder and medical illness in peoplewith intellectual disabilities, Current Opinion inPsychiatry, 20 (5), pp.443–449.

MacKay D, Smith G, Dobbie R and Pell J (2010)Gestational age at delivery and specialeducational need: retrospective cohort study of407,503 schoolchildren, PLoS Med 7(6):e1000289.

Mencap (2004) Treat me right! Better healthcarefor people with learning disabilities, London:Mencap.


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Mencap (2007) Death by indifference: followingup the ‘Treat me right!’ report, London: Mencap.

NHS Health Scotland (2004) The health needsassessment report: people with learningdisabilities in Scotland, Glasgow: NHS HealthScotland.

Northway R, Hutchinson C and Kingdon A (2006)Shaping the future: a vision for learning disabilitynursing, London: UK Learning DisabilityConsultant Nurse Network.

Nursing and Midwifery Council (2008) The code:standards of conduct, performance and ethics fornurses and midwives, London: NMC.

Parliamentary and Health Services Ombudsman(2009) Six lives: the provision of public servicesto people with learning disabilities, London: TSO.

Parrott R, Tilley N and Wolstenholme J (2008)Changing demography and demands for servicesfor people with complex needs and profound andmultiple learning disabilities, Tizard LearningDisability Review, 13(3), pp.26–34.

Royal College of Nursing (2007) Shaping thefuture. A vision for learning disability nursing.London: RCN. Available fromwww.rcn.org.uk/development/communities/rcn_forum_communities/learning_disabilities/news_stories/shaping_the_future_a_vision_for_learning_disability_nursing

Scottish Executive (2000) The same as you? Areview of services for people with learningdisabilities, Edinburgh: TSO.

Torr J and Davis R (2007) Ageing and mentalhealth problems in people with intellectualdisability, Current Opinion in Psychiatry, 20(5),pp.467–471.

Tyler F, Smith L and McGrother C (2007) Mortalityin adults with moderate to profound intellectualdisability: A population-based study, Journal ofIntellectual Disability Research, 51 (7), pp.520–527.

United Kingdom Central Council for Nursing,Midwifery, and Health Visiting (UKCC) (2001)Standards for specialist education and practice,London: UKCC.


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Resources and recommended reading

Royal College of Nursing (2006) Meeting thehealth needs of people with learning disabilities:a guide for frontline staff, London: RCN.

Royal College of Nursing (2007) Mental healthnursing of adults with learning disabilities,London: RCN.

Royal College of Nursing (2010) Dignity in healthcare for people with a learning disability, London:RCN.

EnglandDepartment of Health (2001) Valuing people: areview of services for people with learningdisabilities in the 21st century, London: DH.

Department of Health (2007) Good practice inlearning disability nursing, London: DH.

Department of Health (2009) Valuing people now:a new three year strategy for people with learningdisabilities. Making it happen for everyone,London: DH.

Department of Health (2009) World classcommissioning for the health and wellbeing ofpeople with learning disabilities, London: DH.

Department of Health (2010) Raising our sights:services for adults with profound intellectual andmultiple disabilities: a report by Professor JimMansell, London: DH.

Michael J (2008) Healthcare for all: report of theindependent inquiry into access to healthcare forpeople with learning disabilities, London: TSO.

Northern IrelandDepartment of Health, Social Services and PublicSafety (2005) Equal lives: review of policy forpeople with learning disabilities, Belfast: DHSS.

ScotlandScottish Executive (2000) The same as you? Areview of services for people with LearningDisabilities, Edinburgh: TSO.

Scottish Executive (2002) Promoting health,supporting inclusion: the national review of thecontribution of all nurses and midwives to thecare and support of people with learningdisabilities, Edinburgh: TSO.

NHS Quality Improvement Scotland (2006) Bestpractice statement. Promoting access tohealthcare for people with a learning disability – a guide for frontline staff, Edinburgh: NHS QIS.

NHS Quality Improvement Scotland (2009)Tackling indifference: healthcare services andpeople with learning disabilities, Edinburgh: NHSQIS.

WalesWelsh Assembly Government (2001) Fulfilling thepromises: proposals for a framework for servicesfor people with learning disabilities, Cardiff: TSO.


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Addendum – Learning from the past, setting out the future

Following the publication of Learning from thepast – setting out the future (RCN 2011), theRoyal College of Nursing (RCN) made thefollowing pledge to people with learningdisabilities and their families and work is ongoing:

� the RCN will, through its membership, seek toensure that safe, human rights based practiceis the top priority for nurses

� the RCN is committed to working withindividuals, services and stakeholders toensure the necessary safeguards are in placeacross all practice settings that enable safepractice and care

� the RCN recognises that vulnerability is aparticular issue and concern for people withlearning disabilities and in this regard will,through the RCN Learning Disability NursingForum committee, seek to highlight issues andraise awareness of the needs of this groupwithin society

� the RCN will promote equality, diversity andthe rights of people with learning disabilities,and person-centred approaches to care

� the RCN is committed to working inpartnership with people with learningdisabilities and their families and carers, toensure needs are identified and effectively met

� the RCN will inform, shape and influencelearning disability policy in England, Scotland,Northern Ireland and Wales to improve thecare and support of people with learningdisabilities

� the RCN will support and develop learningdisability nurses to provide high qualitynursing care, support their nursing practicedevelopment, and enable them to act asleaders and professional role models.

This pledge is important as recent investigationsand inquiries have identified significant serviceand system failures in both specialist health andgeneral health services which have contributed topoor care and support for people with learningdisabilities in specialist services (DH, 2012). Therehave been persistent concerns about the care andsupport of people with learning disabilities within

general health services. Government responsesincluded Six lives (TSO, 2008), Healthcare for all(DH, 2008) and most recently the Confidentialinquiry into premature deaths of people withlearning disabilities. The Confidential inquiryreviewed the deaths of 247 people with learningdisabilities over the two-year period andreinforced the need to identify people withlearning disabilities in health care settings, andensure the provision of ‘reasonable adjustments’to ensure the needs of people with learningdisabilities are most appropriately met and avoidserious disadvantage. The report stated that 42%of the 238 deaths, for which agreement of theoverview panel was reached, were assessed asbeing premature (Heslop et al., 2013). It alsohighlighted that professionals must provide thesame level of care to people with learningdisabilities as to others, and avoid assumptionsabout quality of life or the appropriateness ofmedical, nursing or social care interventions,finding that the weakest elements related toproblems with the diagnosis and treatment,thereby contributing to avoidable and prematuredeaths of people with learning disabilities.Collectively these investigations and inquiries allhighlight the need for education anddevelopment to ensure that all practitioners,whether in general or specialist health servicesare aware of the needs of people with learningdisabilities, and have the knowledge, skills andvalues to provide person-centred care that isappropriate to the abilities and needs of theindividual and their family.

Developing learning disabilitynursing

The RCN and the Nursing and Midwifery Council(NMC) is fully supportive of the need for services toprovide equity of access and outcome for peoplewith learning disabilities and, as a result, all nursesneed to have some knowledge about the nursingneeds of children, adults and older people withlearning disabilities and this is a requirement of allpre-registration nursing programmes. In addition,the need for nurses for people with learningdisabilities to further develop their knowledge andskills in respect of physical and mental health was


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also highlighted. Alongside this, across the UnitedKingdom nurses are specifically prepared to workwith people with learning disabilities and there isrecognition of the vital contributions made bylearning disability nurses and health care supportworkers. The RCN supports the ongoing need forsustainable pre-registration learning disabilitynursing programmes across the United Kingdomand for the need to fully support the ongoingdevelopment of learning disability nursing andtheir important role in delivering person-centredcare (RCN, 2007). To this end, learning disabilitynurses and health care support workers play acentral role in the lives of people with learningdisabilities and their families, particularly thosewith more complex care needs by:

� undertaking comprehensive assessments ofhealth and social care needs

� developing and implementing plans of care

� working in collaboration with otherprofessionals to meet health needs and co-ordinate care

� providing nursing care and interventions tomaintain and improve health and promotewellbeing

� enabling equality of access and outcomeswithin health and social care services

� providing advice, education and support topeople with learning disabilities and theircarers throughout their care journeys.

� providing education and support to promotehealthy lifestyles and choices

� providing education and developmentopportunities for other practitioners on theneeds of people with learning disabilities

� acting to safeguard and protect the rights ofpeople with learning disabilities when they arevulnerable and in need of additional support.

The following sections provide an update ondevelopments since the publication of Learningfrom the past – setting out the future (RCN, 2011)along with an indication of current areas requiringaction. For ease of reference the key areasidentified in the 2011 document are used tostructure the discussion here.

Education

Progress to dateWithin the NMC standards for Pre-registrationNursing Education (NMC, 2010) learning disabilitynursing has been retained as a specialist field ofpractice. In addition, in response to the Michael’sReport (2008) which highlighted failures in thecare of people with learning disabilities withinacute care settings the NMC Standards (2010)require all nurses, whatever their field of practice,to achieve competencies in working with peoplewith learning disabilities. The important input oflearning disability nurses and the need for allnurses to be competent in meeting the healthneeds of people with learning disabilities hasbeen further underlined in the Confidentialinquiry into premature deaths of people withlearning disabilities (Heslop et al, 2013).

Since the publication of the RCN (2011) positionstatement some universities have ceased toprovide learning disability nursing courses andthere has been a trend towards regionally basededucational commissioning. Numbers ofcommissioned student places have, however,stabilised when compared with previousreductions and, in some areas, have begun toincrease. There remains, however, a need toensure that future commissioning is informed byboth the demographic profile of the existingworkforce and the changing demography andneeds of people with learning disabilities. Theknowledge and skills of LD nurses areincreasingly valued by a range of social care,independent and third sector organisations but atpresent it is unclear as to whether currentplanning mechanisms capture the workforcerequirements of these organisations. This isparticularly important in the longer term aspeople with complex health needs are supportedwithin social care settings where health caresupport may also be required. Only by taking thisapproach will sustainable models of educationalcommissioning be achieved that meet the needsof a range of service providers and support longerterm viability of educational courses.

Linked to the changing configuration of serviceprovision LD students are increasingly accessing


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learning opportunities in a range of settings andsectors. These opportunities are essential sincestudents need experience supporting people witha range of needs some of which are no longer thefocus of direct care provision within the healthservice. In addition services outside of the healthservice also benefit from such studentplacements as they are then involved indeveloping the workforce for the future. Thisdoes, however, present some specific challengesin terms of preparation and updating of staff tosupervise students since it may not always befeasible for staff from other services to bereleased to attend the preparation.

Arising from Strengthening the commitment(Scottish Government et al., 2012) a UK widelearning disability nurse academic network hasbeen established and work is being undertakenby this group in collaboration with the Council ofDeans to map current provision and to ensuresustainable programmes of educationalprovision.

Health care support workers form a valuable partof the nursing workforce and some may wish toaccess nurse education and achieve registration.All pre-registration courses are now provided atdegree level and hence flexible routes arerequired to support health care support workersobtain (where necessary) the entry requirementsfor accessing an undergraduate programme.

The complex needs of many people with learningdisabilities require nurses educated beyondpreregistration level who undertake coursesclearly linked to client need. Currently sucheducation is required at postgraduate level forthose practitioners qualifying with a first degreeand also at first degree level for practitioners whoqualified earlier and who need support tocomplete their degree. However, some challengesare evident in relation to post-registrationeducation. Continuing professional developmentrequirements, as well as financial constraintswithin health care organisations mean thatpractitioners are often faced with having to self-fund and/ or undertake education in their owntime. From the higher education institution (HEI)perspective courses can only be delivered if thereare sufficient student numbers and this can bechallenging for any one HEI as the numbers of LD

nurses locally may be relatively small. All of thesefactors taken together give rise to the need forpost- registration educational provision which isboth flexible and addresses the range ofacademic levels.

Key issues� The development and provision of educational

courses needs to be informed by the needs ofpeople with learning disabilities to ensurerelevance to changing practice requirements.

� Educational commissioning requirescollaboration across sectors to gain ameaningful understanding of current andfuture workforce needs.

� There is a need to ensure quality educationalprovision both in university and in clinicalsettings for all learning disability nursingstudents.

� There is also a need to ensure that all studentnurses, whatever their field of practice, receiveappropriate theory and practice experiences toequip them to effectively meet the needs ofpeople with learning disabilities in the fullrange of health care settings. This is aparticular concern in those universities who donot have a learning disability field programmeand who may, therefore, not have learningdisability lecturing staff.

� There is a need to develop flexible approachesto mentorship preparation to facilitateinclusion of potential mentors from across allsectors given an increasingly diverse range ofstudent practice learning settings.

� Flexible routes to acquire the entryqualifications necessary to enterundergraduate nursing programmes should bedeveloped for health care assistants (HCAs)and these should include appropriaterecognition of prior experience.

� Flexible approaches are also required to thedevelopment and delivery of post registrationcourses to ensure accessibility andsustainability of courses. This may requirecollaboration between HEIs and differingapproaches to course delivery.


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The ways forward� The implementation of the new pre-

registration curriculum should be monitored todetermine the extent to which it meets thechanging needs of people with learningdisabilities across a range of sectors. Thisshould include monitoring of the provision oflearning disability theory and practice withinother fields of practice. Examples of goodpractice should be shared.

� The development of closer collaborationbetween service providers, educationalcommissioners and educational providers toensure that both the numbers ofcommissioned places and the content ofcourses meet the needs of people withlearning disabilities both now and in thefuture.

� The exploration of flexible approaches to HCAeducation, mentorship preparation and post-registration education ensure sustainability.This could usefully include collaborationbetween HEIs.

� Funding for post-registration education needsto be secured.

Workforce

Progress to dateIt is difficult to comment definitively on progressin relation to the nursing workforce since accuratedata remains difficult to obtain. This is due to anumber of learning disability nurses workingoutside of the health service in a range of rolesbut who are not easily identifiable. What is knownis that Strengthening the commitment (ScottishGovernment et al., 2013) indicated that a numberof factors were likely to impact over coming yearsthat would affect the ability of learning disabilitynursing to respond to rising levels and complexityof needs amongst people with learningdisabilities. Included in these factors are the factthat numbers of student nurse places had fallenover recent years before now stabilising at alower number than previously recorded, thecurrent workforce is ageing and many havemental health officer status meaning that they

can retire aged 55, and the fact that manylearning disability nurses work outside the healthservice but this does not seem to directly informworkforce planning. For example increasingnumbers of learning disability nurses are beingemployed within the prison service. An additionalfactor that needs to be considered is that many ofthe staff likely to retire in the next few yearscurrently hold senior positions in practice,education and research and hence it is not onlypersonnel that will be lost but also valuable years’experience. Nonetheless in recent years some keylearning disability nursing posts have been cut.For example this has occurred in relation to somenurse consultants.

Concerns thus remain as to whether there will besufficient learning disability nurses with the rightknowledge and skills working across the range ofsettings required. Issues relating to knowledgeand skills have been addressed above and work iscurrently being undertaken across the UK to tryand map the current learning disability nursingworkforce. However, some key issues remain.

Key issues� If an appropriate workforce is to be available

to meet the needs of people with learningdisabilities across a range of settings thenthere is an urgent need to identify current andfuture patterns of need and then to engagekey stakeholders from across all sectors inworking together to plan workforcerequirements.

� Current exercises to map the existingworkforce need to make every effort to identifythose learning disability nurses workingoutside the health service in order to obtainmore accurate data.

� Health care assistants undertake a range ofimportant roles yet they are not included inthe current mapping exercises.

Ways forward� The current mapping exercises need to be

expanded to include those learning disabilitynurses working outside the health service andalso HCAs.


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� Mapping of HCAs role and responsibilities

� The development of a mechanism wherebyservice providers from across sectors use thisinformation along with clear evidence ofcurrent and projected client need in order tomore accurately plan for a workforce that isappropriate both in terms of numbers andknowledge/skills.

� Succession planning is needed to ensure thatbefore existing leaders retire youngercolleagues are supported to develop theirknowledge and skills.

Leadership

Progress to dateAt the time the position statement was publishedin 2011 only limited attention had been given tothe issue of leadership within the context oflearning disability nursing. However, growingrecognition of the inequalities in healthexperienced by people with learning disabilities,concerns regarding both workforce numbers andeducation, and the need to demonstrateoutcomes from practice had added impetus to theneed to develop clear leadership within practice,educational and research settings (ScottishGovernment et al., 2012). In addition, as notedabove, a number of existing leaders within theprofession are likely to retire over coming yearsand hence there is a need to focus on successionplanning in relation to leadership.

The focus on leadership at all levels withinStrengthening the commitment is welcomed andthe process of developing this document has ledto the development of new leadershipopportunities. A leadership workshop for thirdyear student nurses was held in July 2013 as partof the Strengthening the commitment programmeand the academic network have a workstreamfocused on this area. Learning disability nurseleaders have become more visible taking upleaders taking up leadership positions in anumber of key national forums and have beenrecognised within national awards. Their profilehas been raised across the wider nursingprofession through the use of social media. The

RCN have also been proactive in developing theaward winning DVD that highlighted leaders at alllevels across all four UK countries. Despite theseimportant developments some key issues remain.

Key Issues� There are few learning disability nurses

working as directors of nursing in either thehealth service or the independent sector.

� There are few nurse consultants working inprimary care, acute care and the independentsector

� Nurse leaders working in the independentsector are often not denominated as such.

� Learning disability nurses working across therange of sectors are often not identified asnurses.

� Further opportunities need to be taken todemonstrate and promote the outcomes oflearning disability nursing practice.

� Learning disability nurses need to takeopportunities to lead the agenda for driving upquality of care.

Ways forward� Further work is required to increase the

visibility of the leadership provided by learningdisability nurses across sectors.

� The RCN Principles of Nursing Practice (2010)should be developed to illustrate how learningdisability nurses demonstrate these principlesin practice

� Learning disability nurses currently working inleadership positions need to be engaged insupporting the developing of other nurses intoleadership roles.

� The role of the learning disability consultantnurse needs to be highlighted through, forexample, their work in the development of thehealth equalities framework.

� The leadership role of learning disabilitynurses in the independent sector need to beboth acknowledged and better understood.

Whilst the areas of education, workforce andleadership have been discussed separately here it


19

is evident that they are inter-linked and inter-dependent. Figure 1 (below) seeks to illustratethis by showing how client need needs to informworkforce planning and that both of theseelements need to inform the development of

educational provision for learning disabilitynurses. Leadership is the glue that binds thistogether since strong leadership across sectorsand at all levels is required to make this a reality.

Department of Health (2012) Transforming care: a national response to Winterbourne ViewHospital: Department of Health review finalreport, London, DH.

Department of Health, Social Services and PublicSafety (2005) Equal lives: review of policy andservices for people with a learning disability inNorthern Ireland, Belfast: DHSSPS.

Heslop P, Blair P, Fleming P, Hoghton M, Marriott A& Russ L (2013) Confidential inquiry intopremature deaths of people with learningdisabilities (CIPOLD). Bristol: Norah Fry Research Centre.

Michael J (2008) Healthcare for all: Report of theindependent inquiry into access to healthcare forpeople with learning disabilities. London: TSO.

Nursing and Midwifery Council (2010) Standards forpre-registration nursing education, London: NMC.

Parliamentary and Health Services Ombudsman(2008) Six lives: the provision of public services topeople with learning disabilities, London, TSO.

Royal College of Nursing (2007) Shaping thefuture. A vision for learning disability nursing.London: RCN.

Royal College of Nursing (2011) Learning from thepast, setting out the future: developing learningdisability nursing in the United Kingdom, London:RCN.

Scottish Government (2012) Strengthening thecommitment: the report of the UK modernisinglearning disability nursing review, Edinburgh:TSO.

Individual

Individual

Individual

Individual

Individual

Aggregateddemographic and

epidemiological datarelating to peoplewith learningdisabilities

ServiceProvision:Workforce

Needs AcrossSectors

HEIprovision ofpre and postregistrationeducation

EducationalCommissioning

Figure 1

References

Workforce of thecorrect number withthe right knowledgeand skills to meet

current and predictedfuture needs

Publication code 003 871

ISBN: 978-1-906633-63-9

January 2011, addendum March 2014

Published by the Royal College of Nursing20 Cavendish SquareLondonW1G 0RN

020 7409 3333

www.rcn.org.uk

The RCN represents nurses and nursing,promotes excellence in practice and shapeshealth policies

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