My role is a Learning Disability Liaison Nurse. I have experience as a Staff Nurse, Community Learning Disability Nurse, School Nurse and a Nurse within a Children’s Hospice and within a Adult Hospice. However, my current role draws much on my personal experience of Learning Disabilities, and this was part of the inspiration for running a week of events during Learning Disability Awareness Week in NHS Ayrshire and Arran.
My older brother has severe learning disabilities. As a child, he had health complications and I have vivid memories of going to hospital appointments or attending the Emergency Department with him where his fear would be almost crippling. To an extend, one might understand and make allowances for his anxiety. The panic was, however, not only on his face, it was also worn on the faces of the doctors and nurses who were evidently unused to his kind of vocal distress to the extent of screaming and being uncooperative. I had to witness how ill prepared they were, how this made my brother worse, and how it unfolded in a busy hospital waiting room under the shocked gaze of others who sat and stared That experience is something I won’t forget.
During my brother’s hospital stays, the hospital staff would end up avoiding coming into our side room as a result of anxiety. These were distressing times and not my fondest memories. When I gained the LD liaison Nurse post last year, I knew this was something I wanted to try to address for other families and people with learning disabilities who, according to the evidence, still face far too many barriers in health services.
People with learning disabilities deserve equal treatment, just like anyone else. The ‘learning disability’ they live with should not keep them from gaining an equal health service.
Being new in the job, I introduced myself to some of the Acute Staff at the Senior Charge Nurse Meeting at Ayr Hospital in 2017. I attended with another Learning Disability Liaison Nurse, Carol. We raised awareness of some of the issues people with Learning Disabilities face and promoted specialist Learning disability services such as the ‘Liaison Nurse Service’. During this meeting we agreed to hold a focus week.
Learning Disability Week -
Learning Disability week is a national week every year in Scotland and England (held on different weeks). Its purpose is to raise awareness of people with Learning Disabilities and their needs within the health service.
This year Mencap had launched the ‘Treat Me Well’ campaign, focusing on “finding solutions to health care inequalities in hospitals and bringing about practical changed so people with a LD always get the treatment they need and equal access to the health care they deserve.” Essentially, how we can make reasonable adjustments within health services for people with Learning Disabilities to improve access and bring down barriers. The document Mencap produced is primarily aimed at the health services in England and Wales, but all of the issues and solutions it detailed can occur in Scotland. It highlighted the barriers people with Learning Disabilities are facing, and how so many patients with learning disabilities are dying in what is, in hindsight, recognised as a ‘preventable death.’ Some of these deaths are people who could be alive with their loved ones if the services they rely on were adjusted and adapted to fit their unique needs, and I see that as a worthy and realistic target for us all in the health service.
That’s why, for our Learning Disability awareness week in Ayrshire, we embraced that same challenge: shining a light on how to make reasonable adjustments that will make a significant difference to people with learning disabilities accessing health services. We opted for providing training to hospital staff because they are often on the front line of services where people with learning disabilities will be coming to use the health services. The first point of contact, if you will. What’s more, the Mencap Treat Me Well document highlighted an important opportunity: hospital staff are telling us they want more of this kind of training and awareness to make them better equipped for working with people with learning disabilities. We have a captive audience, and this was an opportunity to fulfil that demand.
That brings us onto learning disability awareness week. There were three main channels for delivering on the task we set for ourselves.
Step 1 -
Firstly we set up an information stall in the Ayr Hospital canteen. This is a common ground for staff, patients, and carers - to get to the food, they’d have to walk past us! This was crucial to ensuring awareness of what we were trying to do, and to establishing the events of LD week. These stalls allowed us to speak to people face-to-face about the specialist services available for patients with Learning Disabilities, open conversations about reasonable adjustments, and talk about where we could make improvements. Our lovely colleagues within Occupational Therapy made us a fabulous Photo Booth which everyone enjoyed participating in.
Step two was the training for hospital staff through the week. We offered training sessions that was facilitated by multi disciplinary staff from specialist Learning Disability services. This was delivered in the form of presentations, offering real life examples, engaging in group work, and feedback sessions. Specialist Learning Disability staff shared experiences and we heard from hospital staff engaging in the sessions about their own experiences. This opened a dialogue from which we were able to improve awareness and understanding of the specific needs patients with Learning Disabilities might have, and also highlighted what we within the health services have in place already that can assist hospital staff in treating patients with Learning Disabilities, such as the older ‘Getting to Know Me’ booklet, ‘Disability and Distress assessment tool’, and the ‘Vulnerable Patient Assessment’. What’s more, we highlighted how we could together help support people with Learning Disabilities access health care by bringing down barriers around communication, utilising the learning disability liaison nursing staff and the aforementioned assessment tools available. These are small changes that add up to big differences, instilling confidence in staff who now feel better equipped to take on the unique challenges they might face patients with a learning disability, and making patients feel more at home within our health services and less intimidated.
The third channel for our delivery on Learning Disability awareness week was through the Communication Aids kindly provided by NHS Lanarkshire. These were delivered to each area within Ayr Hospital. These offer health care related symbols and photographs, which people who have communication difficulties can use to communicate their needs and wants to staff in a hospital, and so it is vital our health care staff are aware of these and au fait with how they work. The feedback we have had so far is that these booklets are now being utilised regularly to overcome the communication barriers potentially faced by those patients with Learning Disabilities.
Looking back on a busy and successful (and, of course, fun!) Learning Disability Awareness Week, I believe we have made a crucial difference already. We have opened up that important conversation about how we, together, can improve the services in health for people with Learning Disabilities so as to ensure the best possible outcomes. We heard from those staff who engaged that they thoroughly enjoyed the week, and that they had learned about making reasonable adjustments and specialist Learning Disability services available to them to contact for support. I am confident this is a week we shall repeat so as to continue on this path of improving our delivery, and all of it is for the betterment of those patients we seek to help.