The Royal College of Nursing’s (RCN) report, Connecting for Change, highlights the chronic shortage of learning disability nurses and how this shortage is a contributing factor to the unnecessary, premature deaths of people with learning disabilities.

Throughout the report, the RCN highlight the importance of learning disability nurses and the plethora of ways they work to improve the lives of people with learning disabilities. Yet, the small number of these specialist nurses mean they are unable to cover the breadth of roles required.

The report states that learning disability nurses are the smallest group of the four fields of nursing, representing 2.3% of registered nurses.

In 2016, the RCN’s report stated that the number of learning disability nurses employed by the NHS in England had fallen by 33% during the preceding five years. This downward trajectory has continued, with the number of learning disability nurses employed by the NHS in England now 42.1% lower than in 2009.

“Shocking health inequalities”

The severe lack of learning disability nurses is concerning considering that people with learning disabilities face “shocking health inequalities that are difficult to comprehend in modern society”, as the report states.

Among these health inequalities is a significantly lowered life expectancy. On average, people with learning disabilities die 25 years earlier than the general population, with only 38% living beyond the age of 65. This compares to 85% of the general population.

Tragically, many of these deaths are avoidable, with 50% occurring due to either a treatable condition or a preventable occurrence.

The cause of these premature deaths is complex and multifaceted, but a key contributing factor is that the majority (90%) of people with learning disabilities have difficulty communicating or expressing themselves.

Symptoms of health problems can also be difficult for people with learning disabilities to comprehend and articulate, meaning health interventions are often missed. This is particularly problematic considering that 97% of people with learning disabilities have other co-existing conditions, such as physical health conditions, mental health conditions, epilepsy and physical impairments.

Health services therefore need to be properly equipped with the skills required to make the reasonable adjustments that enable equitable access to healthcare, and be designed to meet the environmental requirements that some people with learning disabilities need.

Learning disability nurses play a vital role here in supporting people with learning disabilities to access both primary and secondary health care, promoting communication between the person and the healthcare setting. Specially trained nurses are able to act as a source of expertise for hospital staff, bridging any gaps in communication and ensuring the individual receives the care they require.

The report states that years of NHS funding cuts are one of the main causes of the lack of learning disability nurses, and in order to replenish the numbers of these specialist nurses, the government will need to re-invest in this area. It is clear that without the expertise provided by learning disability nurses, healthcare settings are often fail to make the necessary reasonable adjustments which save lives.

Learning disability nurses are vital to prevent abuse from happening

Around 15-20% of people with learning disabilities present with behaviours that can challenge others or affect their independence. These behaviours can include physical harm to others or themselves, intimidating behaviour and property damage.

These behaviours are often misunderstood by healthcare professionals who are not specially trained to work with people with learning disabilities. As a result, people with learning disabilities often receive inadequate care, including overly restrictive practices and even abuse.

To prevent this from happening, the report states: “We need a skilled workforce with an in-depth knowledge of learning disabilities, a sound understanding of behaviour science principles, and strong clinical leadership.”

Learning disability nurses are therefore vital in preventing abuse from occurring, with many trained in applying behaviour analysis and positive behaviour support to the highest level of clinical competence.

The report suggests that social care providers should continue to employ learning disability nurses to provide clinical leadership and evidence-based interventions for those working with people with learning disabilities in order to provide effective social care.

Furthermore, intensive support teams are needed to prevent people’s support at home from breaking down and promote effective discharges from specialist hospital services. Although the Transforming Care programme has aimed to do this since the Winterbourne View scandal in 2011, progress is slow and learning disabilities nurses could help to speed this up.

People with profound and multiple learning disabilities need specialist support

People with profound and multiple learning disabilities are also at risk of being subject to restrictive practices and abuse, as they often also display challenging behaviours including self-injurious behaviours that serve as communication or sensory functions.

As many people with profound learning disabilities have difficulty communicating, specialist support is needed to ensure their thoughts and feelings are understood as best as possible. This is vital for the person and their family, as it provides them with the opportunity to live their lives to the fullest and have the optimum quality of life.  

Achieving a high quality of life includes meeting their complex health needs, promoting effective communication, providing meaningful engagement and enabling them to have an active role in their local communities.

Learning disability nurses can provide this support and must be included in consultations and developments to provide a voice for people with profound and multiple learning disabilities. The report states that “the vital contribution made by nurses in this setting should be considered and included in strategic planning at local, regional and national levels.”

Learning disability nurses can help prevent people from entering the criminal justice system

People with learning disabilities account for 7% of the prison population in England, and over 30% of the prison population have learning disabilities or difficulties. Sadly, people with learning disabilities are extremely vulnerable in these settings and are often taken advantage of.

As prisons often fail to meet their duty to provide rehabilitation and the number of inpatient hospital beds have reduced as part of hospital closure plans, many people with learning disabilities remain in the criminal justice system and do not receive the care or support that they need.

Learning disability nurses are needed here to divert people with learning disabilities away from the criminal justice system by supporting those who are at risk of being coerced by criminals or gangs. They are also needed to ensure that people with learning disabilities get the help and support they need in custody and court settings.

Some community learning disability services include “forensic” teams that often include learning disability nurses. These teams may provide adapted offender behaviour management programmes, clinical risk assessment and management plans for offending risks, and liaison with criminal justice systems to ensure adequate offence management in the community.

However, although there are examples of good practice, there is a lack of consistency. The report states that the current system is a postcode lottery, with some areas severely lacking in community learning disability services. To improve this, early identification and intervention services for those at-risk of encountering criminal justice services are required, as well as an increase in effective social care provisions.  

Recommendations for the UK government and devolved administrations

Currently, learning disability nurses feel that their contribution to nursing, at times, is overlooked and that their roles are at risk of being misunderstood, undervalued and under-represented nationally. To improve the situation, commitment is required to ensure the role of the learning disability nurse is understood and a planned part of future provisions.

The RCN have committed to working on this problem themselves and have set out a series of recommendations and priorities that the UK government and devolved administrations must address. These include:

  • Addressing the systemic breaches to human rights that people with learning disabilities face.
  • Identifying a minister and/or commissioner who is responsible for addressing the needs of people with learning disabilities.
  • Increasing the learning disability nursing workforce by implementing a career framework.
  • Strategic planning to increase the availability of nurse led social care and adequate social care funding.
  • Continuing to effectively fund academic preparation to become a learning disability nurse.
  • Learning disability mortality reviews must continue to be undertaken and learnt from.
  • Annual health checks must be reviewed to evaluate their uptake and effectiveness and help to reduce health inequalities.

As the report states: “Ultimately, there must be enough highly skilled learning disability nurses across all roles and settings to respond effectively to the needs of current and future demands, and the profession must be relevant for the contemporary abilities and needs of the people it supports.”