Four LD nurses, at various points in their careers, explain why this branch of nursing is challenging, rewarding and downright essential
Learning Disabilities Week 15 - 21 June 2015
The best thing about my job is helping people to change or achieve something that can make a real difference to the quality of their life.
One of the people I work with, a man with learning disabilities, had been really anxious about the future. I’d been contacted by one of his family who said he ‘doesn’t smile as much as he used to.’
I chatted with him over a number of weeks, trying to find out exactly what he was worried about. Finally, he started to confide in me and said he didn’t like his Fridays. “What would you want your Friday to look like?” I asked.
“Swimming,” he said, smiling. Pleased that it was something achievable, I set about organising additional support for him to do this.
In another case, I supported a family to toilet train their son who is diagnosed as having Autistic Spectrum Disorder. I remember receiving a text from the mum saying: “He’s just had his first poo in the toilet!” I had a beaming smile on my face.
The thing about my job is that things rarely happen overnight. It’s often a long process of getting to know people, teasing out information, chipping away and building trust. You need to be patient as well as a good communicator, a wonderful listener and have a strong desire to advocate for people.
There’s a strong sense of community amongst learning disability nurses. When I speak to work colleagues or nurse mentors, not one of them regrets their choice.
Emma Staggs is a community learning disability nurse who works with adults and children. She graduated from USW’s learning disability nursing degree in 2013 and was the recipient of the Paul Wheeler Award for Academic Excellence.
Last week, I did a talk to a group of school children about studying learning disability nursing.
I was asked to describe an experience from my own career which powerfully illustrates the need for learning disability nurses.
I chose two.
I was helping a woman to get more involved in her community and we decided to go to an evening class together. I was stunned and furious when she was declined a place because she ‘doesn’t smile much’. I made the case that smiling was not a requirement to be able to learn how to cook and explained that her specific impairment meant that she was not physically able to smile.
Having challenged the discrimination and lack of understanding that she experienced we went on to join the class and made pizzas and other scrummy things. I can still cut an onion like a professional chef thanks to us going to that class together!
A man I knew told me that he had been to see the hospital doctor about his sore hip. His staff reported that the consultant said that he needed a hip replacement but that because he had a learning disability his ‘quality of life’ would not be improved by having the operation. I made a formal complaint to the hospital that this was discrimination.
His case was reviewed, he got a new hip and had a lot less pain getting on with his life afterwards.
Victoria Jones is a lecturer in learning disability nursing at the University of South Wales.
My main motivator is that I dislike injustice
Prior to working in nurse education, she worked with people with learning disabilities in both residential and community settings. Ruth was the first Professor of Learning Disability Nursing, and the second learning disability nurse to be awarded an RCN Fellowship.
I came into nursing 35 years ago (I obviously started very young!) not because I wanted to be a nurse but because I enjoyed working with people with learning disabilities and this was the best way that I could do it.
However, many years later I am very proud to be a learning disability nurse and equally proud to have been the first Professor of Learning Disability Nursing in the UK.
If you had told me when I first started nursing that this would be the post that I would eventually fill I would probably laughed - professors of nursing were pretty rare then and the possibility of there being one in learning disability nursing (let alone it being me) would have been almost unbelievable. However, it is amazing how far the profession has come in a relatively short time.
My ‘subject’ is very diverse and my work encompasses education, practice and research both specifically in relation to people with learning disabilities and more broadly in relation to nursing and healthcare. I also have the opportunity to contribute to policy development at national and UK levels. This diversity helps to maintain my enthusiasm - no two days are the same and there is no time to be bored.
However I think that my main motivator is that I dislike injustice and whilst many things have improved for people with learning disabilities many still experience injustices both within healthcare and within wider society.
If I can contribute to changing this situation in a small way via any aspect of my work then that is reason enough for me to keep learning, researching, writing, helping others to increase their knowledge, and working in partnership with people with learning disabilities to improve their lives.
Ruth Northway, Professor of Learning Disability Nursing, trained as a nurse in Devon in what was then the Royal Western Counties Group of Hospitals
I love my job - who wouldn’t?!
I love my job and why wouldn’t I?! I am autonomous, empowered, challenged and supported by the people around me. Boredom is never an issue and, hand on heart, I can’t imagine a time when I will ever want to change career. Being a learning disability nurse is unique and wonderful and I think you would be hard pressed to find one who doesn’t love it!
My role is a strategic position to empower people who deal with cancer and learning disabilities. These can range from a consultant oncologist, paid social carer or physiotherapist to the person with a learning disability.
I provide support, education and advice around these issues to all it may affect. My role spans the whole of Wales, and while I don’t actively become involved in care, I facilitate others to do so effectively.
The role is vital because cancer is affecting more and more people, particularly in older age. What’s more, people with learning disabilities are reaching older ages and are more likely to develop cancer or to experience it through someone they know.
We know very little about the combination of both cancer and learning disabilities and so support and advice is essential in empowering people to achieve the most positive outcome.
There are many qualities needed to be a learning disability nurse: enthusiasm, organisation, great communication, questioning skills, observation skills, and a small amount of grit with a healthy dose of realism.
A sense of humour and the ability to juggle are also beneficial!
But the rewards far outweigh any obstacles. To witness a successful outcome after working, sometimes intimately with people, defies words. Career-wise, the world really is your oyster! Roles in all areas are growing for learning disability nurses, as my job shows, and we are ready for the challenge.
When I was asked to describe an experience which demonstrated the need for learning disability nurses, one particular case stood out.
I was asked to work with a lady with moderate learning disabilities who had taken a tumble down the stairs and fractured her arm. She had a history of epilepsy and so was prescribed anti-convulsant medication at the Emergency Department.
When collecting information for the initial nursing assessment it became clear that her last seizure was over two decades ago. Her symptoms were described as having blue lips, appearing unsteady on her feet, then slumping to the floor at the top of the stairs, resulting in her fall.
We made an appointment with her regular GP and I went along to support the carers. Discussions were had around the diagnosis and further investigations were requested.
The carers were helped to understand the various investigations and easy read information found to prepare the lady. As a result, the investigations were successful and an alternative diagnosis was made - her fall was due to heart problems rather than seizures.
The lady was supported and prepared for surgery to fit a pacemaker and the anti-convulsant medication was immediately reduced and stopped.
Without the support of an LDN, she would have continued to take redundant medication, whilst her life may have been shortened by an untreated cardiac condition.
This example shows a positive outcome of getting involved in a timely manner and feedback from those involved said they feel better equipped to manage similar events in the future.
The lady continues to thrive, supported by a knowledgeable and dedicated care team.
Tracey Lloyd has a specialist role as a Macmillan Cancer Nurse for people with learning disabilities across Wales. She is currently studying the MSc Profession Practice (Learning Disability) at the University of South Wales