Chapter 2 Strengthening capability
" Learning disabilities nursing is vital for ensuring people with learning disabilities and their carers get access to general health care in the same way as you or I do. They help people navigate the NHS system to ensure people with learning disabilities, their families and carers get the best health outcomes and support possible. They also support other health professionals to modify their delivery care models to best suit the client's circumstances and enable the delivery of true person-centred care."
Deputy director of nursing, general hospital
This chapter outlines key considerations underpinning efforts to ensure a competent and flexible learning disabilities nursing workforce for the future by:
- maximising the contribution of learning disabilities nursing
- working with people of all ages
- addressing health needs
- providing specialist services.
2.1 Maximising the contribution of learning disabilities nursing
Where we are now
The Royal College of Nursing (16) defines nursing as:
"The use of clinical judgement in the provision of care to enable people to improve, maintain, or recover health, to cope with health problems and to achieve the best possible quality of life whatever their disease or disability, until death."
Learning disabilities nurses are the only professional group specifically prepared to work with people with learning disabilities. This level of preparation, currently provided at degree level, alongside the breadth of biopsychosocial skills, competence and knowledge they develop, makes them a unique and critical component of the delivery of comprehensive services.
Too often in this review examples were cited of how learning disabilities nursing is being under-utilised. Considering the small pool of registered learning disabilities nurses available across the UK and the workforce challenges ahead, it is essential that their expertise is used to best effect for the populations they serve.
Where we want to be
A central requirement for the transformation agenda across the four countries and across all organisations is the need to target the skills, knowledge and competencies of learning disabilities nurses to the right people, in the right places and at the right times.
Positive practice example
Prescriber nurse-led clinics - a community model for people with learning disabilities and epilepsy
A community learning disabilities nurse in Gloucestershire has developed a nurse-led service to enhance epilepsy care for people with learning disabilities, reducing the risk of sudden unexpected death in epilepsy (SUDEP).
Regular appointments, partnership working and training have led to improved recording and medication concordance. This has enabled effective evidence-based nurse prescribing to rationalise people's medication. Reasonable adjustments have also been made by strengthening links and providing relevant data to support access to generic services.
Health outcomes have included:
- 75% seizure reduction;
- 33 people on the epilepsy care pathway with history and medication timeline;
- 9 people accessed a bone density scan, with 7 bone disorders identified (2 results pending);
- 5 women on long-term valproate medication accessed ultrasound scans, with 4 ovarian conditions identified (1 outcome awaited); and
- 544 hours of epilepsy training delivered to carers, empowering people to manage their condition.
The following have been implemented to reduce the risk of SUDEP:
- 17 epilepsy night bed monitors
- risk management plans
- protocols for all people prescribed rescue medication.
Quality, innovation, productivity and prevention savings have also been realised, including:
- reduced unscheduled hospitalisation and emergency calls through improved seizure control, risk management plans and prevention of fractures;
- reduced fuel and travel costs to complement the organisation's Green policy;
- improvements in training, appointment attendance, monitoring and medication concordance, with rationalisation of therapy;
- auditable outcomes using the National Institute for Health and Clinical Excellence's (NICE's) epilepsy-adapted learning disability tool;
- reduction in "did not attends" (13 of 412 consultations); and
- the nurse achieving up to 83 quality monthly contacts (working 22.5 hours/week).
For further information, contact Penny Shewell at firstname.lastname@example.org
Commissioners and service planners should have a clear vision for how they ensure the knowledge and skills of learning disabilities nurses are provided to the right people, in the right places, and at the right time in a way that reflects the values- and rights-based focus of learning disabilities nurses' work.
2.2 Working with people of all ages
Where we are now
Learning disabilities nurses already make a key contribution to quality nursing service delivery across the lifespan. This includes contact and interventions with babies and children, during school years, at transition to and throughout adulthood and, increasingly, in the later years to end of life. The skills and competencies of learning disabilities nurses must be available at these key life stages.
Where we want to be
Learning disability nurses should give specific and conscious attention to ensuring the health needs of children and young people with learning disabilities are appropriately prioritised and addressed. Their skills, knowledge and expertise must be maximised to ensure high-quality services and interventions for children with learning disabilities and their families (17).
Not all children with learning disabilities will require support from learning disabilities nurses, and it is essential that the shift towards improving access to general health services for children continues. Learning disabilities nurses nevertheless possess specific knowledge and competencies that can bring added value, particularly to those with the most complex needs, and they must be a central component of services that deliver care to this population in areas such as skills development, mental health and emotional well-being, behavioural management, complex physical health needs and family-focused intervention and support.
Positive practice example
Supporting parents with learning disabilities - new ways of working
The special parenting service in Cornwell provides assessment of parenting skills for people with learning disabilities who are expecting a baby. Areas where support or teaching is required are identified following assessment of knowledge on all aspects of parenting. The service also provides support, advice and consultation to statutory agencies, midwives and health visitors.
Following birth, the nurses work with all agencies involved to ensure that parents can provide "good enough" parenting, ensure that safeguarding issues do not arise and provide follow-up support to parents at identified key developmental stages. The Parent Assessment Manual is used as an initial assessment tool: this is designed to assess parenting ability for those with mild learning disabilities. Following assessment, interventions can include
solution-focused therapy, video interaction guidance therapy, family therapy and skills teaching. Outcomes include:
- enabling clients to gain the knowledge and skills required for successful parenting
- raising confidence and self-esteem levels
- ensuring good attachment
- reducing family members' concerns about the parents' ability to succeed
- empowering the parents to feel confident to access universal services
- reducing the number of referrals to children's social care over safeguarding issues.
Next steps for the service are to:
- work in collaboration with universal services, midwives and health visitors to promote early referral to special parenting;
- collate evidence from the early intervention project to identify the effectiveness of current interventions; and
- be aware of current evidence-based practice and best-practice guidance to ensure that standards are maintained at the highest level.
Learning disabilities nurses must be prepared for the continuing rise in the number of older people with learning disabilities. These individuals are at risk of a range of physical and mental health conditions and may be frequent users of health and care services and other related agencies. In addition, some people with learning disabilities may be at risk from conditions that are similar to those experienced by older people (such as dementia), but may be too young to access generic older people's care services.
Commissioners and providers of health and social care should ensure the skills, knowledge and expertise of learning disabilities nurses are available across the lifespan. This should be enabled through effective collaborative working across health and social care structures.
2.3 Addressing health needs
Where we are now
There is strong evidence that people with learning disabilities have poorer physical and mental health and greater health needs (including needs related to behavioural difficulties) than the general population. In addition, many have difficulties accessing and using general health services. Learning disabilities nurses have expertise in facilitating and supporting access to general health care services.
The Nursing and Midwifery Council (NMC) standards for pre-registration nursing education (18) reflect the health role and function of learning disabilities nurses, stating:
"Learning disabilities nurses must have an enhanced knowledge of the health and developmental needs of all people with learning disabilities, and the factors that might influence them. They must aim to improve and maintain their health and independence through skilled direct and indirect nursing care. They must also be able to provide direct care to meet the essential and complex physical and mental health needs of people with learning disabilities."
The contribution of learning disabilities nursing in addressing health needs within the social model of disability has been the source of some confusion. It is important that learning disabilities nurses and services recognise that poor health (in its widest context) limits participation in society.
Where we want to be
As the Learning Disability Consultant Nurse Network (19) states:
"The primary focus of learning disabilities nursing interventions within the social model of disability is upon reducing or eliminating barriers to good health and thereby increasing social inclusion."
Learning disabilities nurses and their employers should recognise their crucial responsibility in improving health and well-being and reducing inequalities and should engage actively in commissioning, designing, monitoring and delivering services to ensure their accessibility.
A partnership approach across the lifespan involving primary care, child health, mental health, secondary care and specialist learning disabilities health services is essential.
Learning disabilities nurses are ideally placed to contribute to the preventative, early-intervention, strengths-based and public health approaches that are increasingly being applied to the general population to address health needs. While health promotion activity has been at the forefront of learning disabilities nurses' practice for many years, other more proactive preventative and public health approaches to addressing health needs have been less visible in their day-to-day work.
This broader holistic approach to addressing health needs will:
- ensure preventative action and early intervention is a core component of assessment and care planning;
- encourage people with learning disabilities, their families and carers to take a more active role in controlling their own health; and
- support strengths- or assets-based approaches to care and interventions.
There is a clear need for public health interventions to meet the needs of people with learning disabilities, their families and carers and for learning disabilities nurses to engage with colleagues within public health, primary care and other relevant health and cross-sectoral agencies, such as criminal justice and homelessness services.
A proposed model for addressing health needs in the context of learning disabilities nursing is set out in Fig. 1.
Fig. 1 Proposed model for addressing health needs in the context of learning disabilities nursing
Working with children
Maximised potential of the child.
Improved interagency working.
Reduced incidence of long-term health issues.
Inequalities in health
Health action planning/interventions.
Education of others.
Reduced morbidity and mortality.
Reduced risk for patients in generic services.
Working with parents and families
Supporting parents and siblings of people with learning disabilities.
Supporting parents with learning disability.
Family-orientated service delivery.
Reduced safeguarding issues.
Improved family health and lifestyle.
People facing additional risks
Targeting relevant public health needs (e.g. mental health, drugs/alcohol and sexuality).
Enhanced self-care, peer support and independence.
Reduced risk and safeguarding issues.
Reduced self-harm and distress.
Caseload/population needs assessment.
Improved and informed commissioning of services.
Positive practice example
The health facilitator role focuses on ensuring people with learning disabilities live healthier lives and enjoy better health. A significant number of adults with learning disabilities are not receiving a service from community learning disabilities teams but are known to GP practice staff.
A database is presently being constructed in the Southern Trust region of Northern Ireland to provide accurate figures. All practices have been visited by the health care facilitator who will:
- meet with the practice manager to cross-reference names of adults with learning disabilities with practice population lists;
- deliver an education session to GPs, practice nurses and reception staff on health needs and barriers to meeting need;
- encourage practice staff to establish clinics and complete a thorough health check on each individual;
- explain the requirements of the direct enhanced services (DES); and
- agree dates for clinics with GPs and advise on how to ensure good uptake of appointments.
Figures from primary care show that 932 health assessments were carried out in 2009 and 904 in 2010. GPs and practice nursing staff appreciate clinical input and support to develop understanding about people with learning disabilities, especially around behaviour management, communication difficulties, consent issues and health needs. Analysis to date suggests that practices with the health facilitator on site are more likely to meet the requirements of the DES.
A large number of health issues have been identified, including obesity, diabetes, hypertension, lack of medication review and lack of electrocardiograms for people on anti-psychotic medication. Many of these health issues have previously been undetected and unaddressed. GPs and practice staff have developed a rapport with people with learning disabilities, their families and carers, and practice staff have a better understanding of their health issues.
Commissioners and providers of health and social care should ensure that learning disabilities nurses are able to collaborative effectively with general health services, including mental health services, to address the barriers that exist for people with learning disabilities to improving their health. This should include proactive health improvement, prevention, whole-family and public health approaches.
2.4 Providing specialist services
Where we are now
Existing specialist services, when appropriately deployed, provide early intervention, crisis resolution and outreach that can reduce unnecessary admissions to hospital through expert assessment, care planning, interventions and evaluations for individuals and their families.
The need for specialist nursing skills in these areas is already significant and is likely to grow in the future. Learning disabilities nurses working within specialist services should possess, or be working towards developing, the appropriate specialist skills and should be able to demonstrate higher levels of judgement, discretion and decision-making in clinical care (20) relevant to their role.
Where we want to be
Evidence collected by the review suggests that assessment and treatment services could further develop and use a range of therapeutic interventions that have positive outcomes for people with learning disabilities. This would require further support and investment in education and development. The specialist role of learning disabilities nursing within assessment and treatment services must therefore be supported through the development of appropriate models of care and provision of relevant education support.
Health care providers and commissioners should review the needs of their populations and make provision to ensure delivery of specialist learning disabilities nursing skills where needed. This may involve reviewing their current workforce configuration and increasing collaboration with education providers.
To ensure that people with learning disabilities and their families receive the best holistic care, skills traditionally associated with acute and community nursing will need to become a core part of learning disabilities nurses' "toolkit".
Positive practice example
A low-secure unit that provides assessment and treatment for men with learning disabilities and forensic issues in Northern Ireland has developed group work and 1:1 therapeutic work for individuals who exhibit behaviours (or who are at risk of committing behaviours) that are sexually harmful to others.
The assessment and treatment programme initially implemented for this group was the Home Office accredited "Adapted Sex Offender Treatment Programme". Prior to implementation, two nursing staff were required to undertake intensive accredited training in advanced group work delivery and complete a period of secondment with probation services, delivering programmes and compiling risk assessments and management plans for offenders. Further training was then completed to deliver treatment specifically to those with learning disabilities.
The programme was based on the cognitive behavioural therapy model, giving individuals the opportunity to take responsibility for their offending behaviour and work towards skills development that would help them identify their specific areas of dynamic risk and formulate relapse-prevention strategies to lower their risk of reoffending.
The work was acknowledged in 2008 when two nurses from the hospital were granted the RCN Nurse of the Year for Northern Ireland award in recognition of setting up and facilitating a programme of treatment that at the time was unparalleled in Northern Ireland.
Nursing staff are providing consultancy on facilitation techniques, programme content and delivery. It is envisaged that nurses who are already qualified to deliver advanced group work will also become involved in training other staff to deliver the new programme. This will lead to a core group of nurses within the hospital who are able to work as therapists, delivering treatment within group work and 1:1 settings and compiling risk assessments and management plans in partnership with people with learning disabilities to facilitate return to community living in the most appropriate and safest way.
For further information, contact Rhonda Scott at email@example.com
Commissioners and service providers should ensure that specialist learning disabilities services for complex and intensive needs (including assessment and treatment services across all sectors) employ sufficient numbers of appropriately prepared and supported registered learning disabilities nurses. This highlights the need to support and develop the availability of specialist and advanced clinical skills and knowledge of learning disabilities nurses in all settings.
Email: John McKain
There is a problem
Thanks for your feedback