Developing a Learning Disability Nursing Compendium
Developing a Learning Disability Nursing Compendium
In the following opinion piece, Paul Evans reflects on his career and his recent leadership role to develop a compendium of best practice across universities in England; all with the aim of preserving the brilliance of Learning Disability Nursing. Please note, some of the historical terminology being referenced in the article was appropriate at that point in time. However, it should be noted that such terminology is no longer in use.
In late 2021 I was commissioned by Health Education England and NHS England to undertake a project to review how Universities (or Higher Education Institutions (HEI’s) as they are sometimes referred) are promoting, delivering, and celebrating learning disability nursing. The project had a broad scope, and the findings will be used to enable the learning disability nursing academic profession to further enhance the profile and the impact of the work they do.
The project is referred to the Learning Disability Nursing Compendium and whilst undertaking the project it led me to look back on my career and reflect on the key points that inspired me to undertake this work. This in some ways would give a focus on how I arrived at this point and what contributed to my own ideas, views, and beliefs that I hold which have influenced my enthusiasm for Learning Disability Nursing and my firm conviction that it is an essential field of nursing that supports people with learning disabilities.
"...academic colleagues that I spoke with in each university demonstrated such a high level of enthusiasm and commitment to their roles and to the development of their students to become Learning Disability Nurses."
Being a child of the 60’s my early life experience shaped my worldview as it does for all of us. I was brought up on the West coast of Scotland at a time when the religious divide between Catholics and Protestants was evident in everyday life and was a spillover from the ‘troubles’ in Northern Ireland.
I also experienced a year with my family in South Africa at the time when apartheid was at its peak. In my final year of high school, I did what was then termed ‘community service’ or work experience as its now known. As part of this experience, I volunteered in a ‘Spastic School’, as it was called then. The school was for people with all different forms of disability who were segregated from others and was seen as an innovative approach to education and welfare.
These formative experiences gave me a clear picture of the impact of difference and discrimination and how people could be classified as other and different. This gave me the drive to look at how I could be part of the system to change the way people with disabilities were seen in society.
In 1977 I started at Dundee College of technology (now the University of Abertay) on a 4-year BSc in Nursing with a view of qualifying as a Nurse for people with Mental Deficiencies (the term used then in Scotland). I was the only one out of my cohort of 20 that chose this field, where the majority of others chose adult nursing or mental health. Following qualification, I decided to undertake a further 6 months post registration training to gain a dual qualification in adult nursing as, at that time, it was seen as essential if I wanted to progress. At that time Mental Deficiency nursing was not seen as ‘proper’ nursing on its own.
Working as an RGN staff nurse for one year in Ninewells hospital I would often be asked to support patients who either had mental health issues or had a learning disability even though this was not my main role. Perhaps by default it was a very embryonic version of the learning disability nursing liaison role.
Following this in 1983 I moved to Cambridge and worked at the Ida Darwin Hospital. It was a relatively small modern hospital compared to some of the large institutions at the time. It had a sense of community with both patients and staff having long term bonds, but it was isolated from mainstream society. I was given the opportunity to develop a new venture for 8 people living in ordinary houses in the community which I jumped at.
I had free reign to pick a team of people to work with me and identify individuals who would move into these new homes. This venture gave me insight into the values of staff who worked in the hospital and who saw the move as a threat to their professional lives. It was viewed negatively by many who felt that the people who were moving out would not survive in the community. This included a consultant psychiatrist whose role was embedded in the running of the hospital.
"...this gave me the drive to look at how I could be part of the system to change the way people with disabilities were seen in society."
The 8 people moved out into two semi-detached houses in a village some miles from the institution. There was initial opposition from some families as they had previously been told that their relatives had a home for life in the hospital and that they would be vulnerable in this new venture. Those who moved into the new homes were not the most able but had close relationships with each other as friends. In their new environment they thrived and became valued as equal citizens.
After 18 months it became apparent that what we were achieving in this venture was working, but it was a drop in the ocean as far as wider system change was concerned. For me it was time to make a bigger difference and I took on a joint role at Whixley hospital near Harrogate as a Tutor on an RGN course for an 8-week student placement at the learning disability hospital and as an in-service training officer for staff working at the hospital.
This was a new experience for both the students and the staff who were given the opportunity to explore values and experiences of people who were patients in the hospital. It was also a time of change where staff and patients were moving out into ordinary homes in the local communities.
It also coincided with changes in nurse education with the birth of ‘Project 2000’. As a result, my role changed, I helped in the development of the Learning Disability branch of nursing within the new curriculum. It was key for me that this reflected the changes in the lives of people with learning disabilities and the move to more community-based services. Having recently attended a National Learning Disability Nursing conference coordinated by the then English National Board for Nursing (ENB) I adapted what had been presented and developed the client allocation model of practice where individuals were the focus of student experience, not placements.
Over a period and with support, the development of ideas from practice this model evolved into what became known as ‘Individual Led Practice’ where student experience was gained through a small portfolio of work undertaken with individuals with learning disabilities supported by practice supervisors who were Registered Learning Disability Nurses. This model developed in different ways but is often seen in the current hub and spoke model of practice experience.
Through the many changes and developments of nurse education over the years, I eventually became field leader for Learning Disability Nursing at the Department of Health Sciences at the University of York. The field of practice at York was given ‘outstanding’ in 2010 following an NMC monitoring visit for its practice structure and involvement of people with a learning disability from course design recruitment, teaching and mentoring.
During this time, I also worked for the NMC as a visitor which included monitoring Learning Disability Nursing programmes across England, an experience which provided valuable insight into the development of courses and how universities managed these. This proved invaluable in my recent involvement with the Compendium project.
In 2020 and at the grand age of 60, I retired from my role as a Senior Lecturer / Associate Professor which also followed the cessation of the Learning Disability programme because of falling numbers.
Throughout my career my passion for my work has never wavered, so the opportunity to engage in this project was too good to resist and I emerged from the cocoon of lockdowns and retirement to explore key ideas and good practice that would promote and enhance the recruitment to Learning Disability Nursing programmes in Universities in England and help ensure its continued development and evolution.
The Compendium project has been a pleasure to work and lead on and has provided a valuable opportunity to explore innovative ideas with 30
Universities from across England to explore the profile that Learning Disability Nursing has both within the wider family of nursing and in the general population.
The academic colleagues that I spoke with in each university demonstrated such a high level of enthusiasm and commitment to their roles and to the development of their students to become Learning Disability Nurses. The project content was greatly enhanced by the people with learning disabilities who work with the universities, and I am extremely grateful to them for giving me the ideas and information that will be used to help promote the continuation and development of Learning Disability Nursing.
The feedback from the Universities who contributed to the Compendium highlight key points that will lead the way forward for Learning Disability Nursing. The most prominent themes are outlined below.
There is a need to enhance the marketing, recruitment, and retention of Learning Disability Nursing programmes to candidates by having dedicated visible materials that clearly outline the nature and unique contribution that Learning Disability Nursing makes to the lives of people with learning disabilities and their families.
Learning disability Nursing needs to be seen as equal to other fields of practice and can work to enhance the contribution of others in diverse settings including non-specialist settings in hospitals and community settings.
There is still a need to promote Learning Disability Nursing within the profession as equal to that of the other fields on nursing. In addition, we need to raise awareness within the general population that learning disability nursing is afield in its own right. The way forward is to promote the skills and unique contribution that each field of practice brings and dispel the myths that a generic nurse will meet the needs of all patient groups. Yet is needs to be better recognised that Learning Disability Nurses have a critical role to play in the future delivery of high-quality health and social care.
As a catalyst for change and for the assisting in preserving the future of the profession, the All-England Plan for Learning Disability Nursing is developing both ideas and solutions for the profession and the wider health and care system that will see Learning Disability nursing continue to evolve to meet the healthcare needs of people with learning disabilities not just today, but well into the future.