On Tuesday, I travelled from South Wales to Manchester in readiness to attend the 4th Annual Learning Disability Practice Conference. During my two and a half hour train journey, I pondered over what to expect. Upon arriving in Manchester, my initial thoughts were, ‘What a vibrant city!’. Coming from a small town in the Welsh valleys, Manchester felt a million miles away. I stayed in a hotel overlooking Piccadilly Gardens, where there were lots of people enjoying the beautiful afternoon sunshine, eating food al fresco and enjoying live music – this went on until late into the night. This is a far cry from my local town, Ebbw Vale, which is much quieter. You may be wondering why I’m telling you this. Well, through listening to the wonderful array of speakers from all over the UK at the conference, I soon learned that there are common issues affecting people with learning disabilities wherever they live. Whether people with learning disabilities live in rural villages, small towns or big cities, they are not receiving the services they need to have equitable access to good quality healthcare – the speakers at the conference made this abundantly clear.
The first speakers of the day, Viv Cooper and Jill Nasrulla, were the most profound in my opinion as
they set the tone for the whole day. Jill is the mother of a young man with severe autism, learning disabilities and behaviours that challenge, making her an expert by experience. She is one of the fore-runners under the Transforming Care programme and gave a very moving account of how she secured the discharge of her son from long-term inpatient services using a personal health budget. Her son’s story could be a likened to accounts reminiscent of bygone eras, as she described his suffering from time spent as an inpatient in a generic secure unit. This much-loved young man has lost his fluency of speech forever and now suffers from post-traumatic stress disorder (PTSD), which is directly attributable to the trauma he experienced as an inpatient. He was subjected to prone restraint (used almost daily, sometimes for 11 hours!), which left him with broken teeth, nail marks and purple bruises – he was described as a ‘set of behaviours’! His 28-day assessment turned into 5 tragic years, where he was traumatised by those who were meant to make things better. Thankfully, he is now building a new future with a bespoke service that meets his individual needs, which was developed through following principles of co-production. As RNLDs, we must all ensure that this does not become yet another buzz word without real meaning, but that it is truly embedded in our practice. This way we can ensure that care plans reflect individual needs, considering the views of those who know the person best – often this is their family. His ‘monster profile’ has now been demystified and he enjoys activities he missed for many years, such as kayaking. We were privileged to watch a beautiful video of him exuding happiness as he set off for fun on the water in a kayak. This provoked a spontaneous reaction from the audience of smiles and laughter as we watched with delight! Jill argues that people must, ‘See the person, not the behaviour’.
There were many other wonderful speakers and interesting workshops throughout the day. Joann Kiernan and Jim Blair discussed how hospitals can be ‘scary’ places, reminding us that we need to support our colleagues in generic healthcare to help them learn – let’s not condemn people for not being politically correct or we run the risk of barriers going up. Michael Brown spoke about the importance of good quality evidence and research to underpin what we do and why it’s needed. This theme was intertwined across many of the other talks and workshops, as consideration was given to identifying outcome measures to validate roles and further develop teams and services. Lindsey Allen discussed the Learning Disabilities Mortality Review (LeDeR) programme, stressing that it’s not just a data collection exercise, but a method for identifying ways to make improvements, such as promoting flu vaccines for people with learning disabilities, as this could help reduce respiratory related deaths. Tracey Hartley-Smith, winner of the RCNi Learning Disability Nursing Award 2018, urged us to ‘be bold’. We need to have the attitude that we can make changes to improve lives, as we need to be bold to make progress.
There were 3 engaging and diverse workshops, which included Mencap’s Stephen John and Mark Johnson, who discussed their work on the ‘Treat Me Well’ campaign. Ged Jennings and Serena Jones, Acute Liaison Nurses, shared the journey of their service since its inception 2 and a half years ago, explaining how challenging it can be to devise meaningful outcome measures. It reminded me of my time as a Health Liaison Nurse, prior to making the move into academia – reflecting on fond memories of helping to develop a much-needed service which reduces health inequalities for people with learning disabilities. Simon Jones and Kim Ashwin got us thinking about assistive/personalised technology – ‘big help or big brother?’. It left me wondering whether we give this enough time on the curriculum at the University of South Wales. Should we be giving this more consideration, in what is now a digital age?
The final thoughts for the day were presented by Debra Moore, who suggested that, ‘Change only
happens when we are dissatisfied’. I was in a room full of dissatisfied RNLDs who could be instrumental in bringing about positive changes for people with learning disabilities, but we must ensure that we ‘listen carefully’, as needs change over time. Debra suggested that we need to ask ourselves 5 questions:
Who are you?
What do you do?
Who do you do it for?
What do they want or need?
What do they get out of it?
The answers to these questions will differ for each of us, despite us all being RNLDs. Furthermore, the answers will change over time as services change and as issues change for people with learning disabilities. So, my advice to all my fellow RNLDs and student nurses in learning disabilities is, ‘Don’t get comfy!’ – the moment we do, services become stagnant and no longer reflect the contemporary issues affecting the lives of people with learning disabilities.
Rachel Morgan, Specialist Lead (Learning Disabilities) at the University of South Wales
You can train to become a Learning Disability Nurse at University of South Wales, you can find more information on the USW website: https://www.southwales.ac.uk/courses/bachelor-of-nursing-honslearning-disabilities/
You can also contact Rachel Morgan via email: firstname.lastname@example.org