If a person who has a learning disability is banging their head, being silent, or laughing it is not always easy to understand what is happening with and to them.
However, it is far better not to assume that it is just how someone behaves. It is always essential to explore what is happening is there something physically wrong with their health or perhaps they are mentally under stress? It is a case of tuning into the person’s frequency to explore what is actually occurring with and for them to ascertain how best to assist and really understand them.
A brief history of learning disability nursing
The world in 1919 was very different to the world in which we currently live. It was then 100 years ago that the UK’s first learning disability nurses were registered as mental deficiency nurses. This was the preferred term until after World War Two when it was replaced by mental subnormality nursing which in turn evolved into being named mental handicap nursing during the 1970’s. The 1990’s saw the current terminology of learning disability nursing taking hold alongside a much more community care based focus that led to the closure of long stay hospitals.
"Equal treatment does not mean treatment that is the same for all".
At first mental deficiency nursing was awarded by the national body for psychiatrists, the Medico-Psychological Association (MPA). This was the national awarding body for most of these nurses until the early 1950's when the General Nursing Council took control of all nursing education, and the newly introduced National Health Service (NHS) had taken over running the large institutions where learning disability nursing evolved within and from.
Learning disability nurses currently work across and within many different sectors in order to enhance and improve the lives of people with a learning disability with and for them alongside family, carers other health professionals. The plethora of roles learning disability nurses undertake can be seen in the info graph below. Learning disability nurses perform these roles in NHS and non-NHS settings mostly across and within primary, acute, and community settings.
The 'Give Me Five' model
The core elements and functions of a learning disability nurse are set out in the 'Give Me Five' model and this reflects my vision for the profession.
- Address diagnostic overshadowing
- Health issues and how they relate to people with a learning disability
- Consistently engaging individuals and their families in care evolution
- Education in action with and for colleagues modelling practice
- Law, Mental Capacity Act, Equality Act, and Human Rights Act
A central component of the role of a learning disability nurse is to address diagnostic overshadowing.
Diagnostic overshadowing happens when a health professional makes the assumption that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors such as biological determinants. Diagnostic overshadowing has been defined as “once a diagnosis is made of a major condition there is a tendency to attribute all other problems to that diagnosis, thereby leaving other co-existing conditions undiagnosed".
This means that behaviours that could indicate a physical or mental health issue are attributed to the individual's learning disability rather than striving to explore other causes for the behavioural change. It is essential that behind every new behaviour or increase in existing behaviour that a mental or physical health reason is considered.
The Confidential Inquiry into the Premature Deaths of People with a Learning Disability (CIPOLD) found that people with a learning disability have far worse health outcomes than those in the general population. These include:
- Reduced access to and less likely to receive interventions for their obesity, including screening for thyroid disease and diabetes
- Greater risk of death from amenable causes (avoidable due to medical intervention)
- Variance (approximately 48%) in amenable death rates in the non-learning disability population
- Low take up for national cancer screening programmes (for example, breast, bowel and cervical)
- Low uptake of immunisations such as ‘flu vaccinations'
- In 2017/18, only 44.6% of patients with a learning disability received a flu vaccination and only 55.1% of patients with a learning disability received an annual learning disability health check
- Increased risk of death due to respiratory infection – one of the highest causes of amenable death
CIPOLD found the most frequent reasons for premature deaths were:
- Delays or problems with diagnosis or treatment
- Problems with identifying needs
- Difficulty providing appropriate care in response to changing needs
The Learning Disability Mortality Review (LeDeR) that evolved from CIPOLD found an average age of death that is 23 years younger than the general population for men with a learning disability and 27 years younger for women. The pillars set out below once adopted and integrated into service plans and protocols should assist in significantly addressing these and other dreadful findings outlined above.
NHS long term plan
- Make sure the NHS works in the best way possible so that people can get help more easily, close to where they live, when they need it
- Get better at helping people stay well- preventing and reducing health inequalities
- Make care better- improve care quality and outcomes
- Personalise care
- Tackle causes of preventable deaths
- Tackle causes of preventable deaths – increase take up of annual health checks
- Ensure that all of the NHS understands the needs of people with learning disabilities and work together to improve health and well-being - health providers make reasonable adjustments such as easy to read materials, dimmer switches, longer appointments, quieter waiting areas, in line with the Equality Act (2010). By 2023/24, all NHS Trusts and NHS funded care will have to reach NHS Improvement Standards (2018) about:
1. Respecting and protecting rights
2. Inclusion and engagement
4. A fourth standard for specialist learning disability services.
Assisting staff to deliver high standard care
It was with these in mind and in particular the NHSI Standards that I created the four ‘pillars of evidence’ to assist staff to deliver the standards across and within the NHS. NHS Trusts are required to meet these standards and in doing so will be deemed as ‘delivering high quality services for people with learning disabilities.’
For the standards to be completely implemented, learning disability nurses alongside other health professionals, need to gather data and evidence in relation to the care of people with learning disabilities across and within primary, acute, and community care settings and services. It is essential just as within the NHSI Improvement Standards that input, feedback, and advice from people with learning disabilities and their families are central throughout the pillars and tripods.
The four pillars metaphorically sit underneath the NHSI Standards are:
- Referral to treatment from point of referral by GP to the treatment taking place
- Attendance at outpatients being successful so appointments happen rather than breaking down and not effectively occurring
- Reducing lengths of stay in acute hospitals for people with learning disabilities who tend to spend longer periods of time in acute hospitals than other members of society
- Reduce readmission rates to acute care post discharge within 12-48-hour period.
If these are adopted and embedded within service structures across and within primary, acute, and community settings where learning disability nurses are working alongside other health professionals, the health outcomes for people with a learning disability will be improved. Central to all of this is the ability to adapt services to meet the specific needs of people with a learning disability and in accordance with the Equality Act (2010). In that Act there is a requirement to make reasonable adjustments to ensure people with learning disabilities can access the care they need.
In other words, equal treatment does not mean treatment that is the same for all.
North Staffordshire Combined Healthcare NHS Trust have created the following in relation to Reasonable Adjustments which are important for all participants in the health consultation:
E asy access
A ble to speak
S imple language
O pen and honest
N ot scary
A sk questions
B etter outcomes
L onger appointments
E asy read leaflets
A tmosphere is calm
D on’t feel rushed
J ust relax
U nerstanding (checking a person’s understanding and ability to consent as well as assisting them such as through breaking things down in shorter words, using pictures and other visual aides)
S afe environment
T ake someone along (so the person with a learning disability is not on their own but with someone they know who can help them after)
M ake yourself heard
E asier for you
T ake your time
The future of learning disability nursing
Learning disability nursing has evolved over the past 100 years and is in a strong place going forward to enhance and improve the health and well-being of people with a learning disability in partnership with them alongside many other health professionals to ensure better more timely interventions. This can only be achieved by tuning into a person’s frequency and understanding them. Care adjustments must necessarily be made in order to ensure equal treatment.
- See more: 'Moss-PAS': the mental health assessments that became an international success story
- See more: Cervical cancer screenings: addressing the health inequality founded upon misconception
- See more: How far can reasonable adjustments address health inequalities?
Ensuring that the pillars set out above are embedded within the structures of health provision and feed into the NHSI improvement standards will positively impact on lives of people with a learning disability as well as illustrating the worth of learning disability nurses.
The role and function of the learning disability nurse set out in this paper in the 'Give Me Five' model is vital going forward. These key elements need to be embedded within all aspects and roles learning disability nurses undertake in every setting. This should place learning disability nurses at the heart of addressing health issues experienced by people with a learning disability.
Jim Blair is the Learning Disability Nursing Project Lead at the Royal College of Nursing and Clinical Advisor for Learning Disabilities at the Queens Nursing Institute. Find out more about the past, present, and future of learning disability nursing at Learning Disability Today London 2019 where Jim will present along with experts by experience, family representatives, and Cecilia Anim (Past President of Royal College of Nursing).