The Confidential Inquiry into the premature deaths of people with a learning disability (CIPOLD), (see Heslop el al, 2013) found that people with learning disabilities have far worse health outcomes than those in the general population. As identified by CIPOLD (2013) men with learning disabilities die, on average, 13 years earlier than men in the general population, while women with learning disabilities die 20 years earlier compared to the general population. The most common 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 (Heslop et al., 2013).
People with learning disabilities have far worse health outcomes than those in the general population
In the UK, guidelines presented by the National Institute of Health and Care Excellence (NICE) (2017) emphasise the need for individualised training in communication techniques for families, carers, preschool and school staff and other people involved in the care of a child or young person with cerebral palsy. In recent years many organisations have come out with guidelines emphasising the care needs around individuals with learning disabilities and complex communication needs. The Royal College of Speech and Language Therapists released a document in 2013 (Royal College of Speech and Language Therapists, 2013), outlining reasonable adjustments to communication individuals with learning disabilities or autism should expect in specialist hospitals or community settings. And in 2017, the RCN released a guideline for pre-registration nurses in regards to what they should know about the needs of people with learning disabilities (see RCN, 2017). Whereas, the Royal College of Paediatric and Child Health (2018) provides training exploring communication with families when children have a life-limiting condition and complex needs.
Although these guidelines and standards have been developed in relation to nursing interventions to improve communication, these do not guarantee the development of nursing skills and knowledge (Lewis, Gaffney and Wilson, 2016). Mencap (2012) published a report emphasising health care inequalities and the effect they continue to have on people with learning disabilities. Highlighting shortcomings such as disregarding crucial advice from families which led to individuals’ untimely deaths. Many families and carers report problems in getting health professionals to take crucial information about the needs of the person with a learning disability into account. Tools to assist in exchanging vital information, such as hospital passports, are not always utilised (Mencap, 2012).
Many families and carers report problems in getting health professionals to take crucial information about the needs of the person with a learning disability into account
After performing a comprehensive literature review, it is clear that there is a lot of anxiety in health care settings around communication with patients who have complex communication needs, as well as physical and/or learning disabilities.
Therefore, this project looked at the need and eventual benefit of providing health care professionals, specifically nursing staff, with a toolkit in regards to communication with patients who have complex communication needs. The toolkit will provide tips on how to communicate effectively and personably, what to do and what not to do as well as outlining websites for up to date information on communication needs and potential ways to help. It would also provide support or tips that can be easily implemented on a ward, e.g. provide a simple communication book, a letter board, and have green/red, yes/no cards.
Although patients with complex needs should arrive with completed hospital passports, sometimes these are not comprehensive enough. The toolkit aims to bridge that gap, where someone knows they are looking after a patient with communication needs, before hospital admission where possible. By providing the professional with communication strategies, this toolkit aims to reduce staff anxiety as well as benefit the relationship between carer and patient. Overall this should provide a more positive experience everyone.
[...] guidelines presented by the National Institute of Health and Care Excellence [...] emphasise the need for individualised training in communication techniques for families, carers, preschool and school staff and other people involved in the care of a child or young person with cerebral palsy
Aims and objectives
The aim for this project has evolved since the first submission, and it now focusses on the creation of the toolkit itself. I have focused on ascertaining leaders perspectives on the value and potential need for help with complex communication needs, as well as doing a comprehensive literature review looking at the need and benefit behind the implementation of a communication toolkit. If the toolkit is implemented there is the potential to progress towards educational sessions, and even the setting up of communication champions on the ward as well as other settings within health care.
There is a lot of staff anxiety around communicating with patients who have complex communication needs, especially in regards to patients with learning disabilities
Activity and outputs to date
Throughout the project I have gathered feedback about the potential value of a toolkit from leading professionals and academics in the field of learning disability as well as from lecturers at my university. One of my university assignments involved undertaking a comprehensive literature review so I was able to focus my research question around complex communication needs. This essay highlighted the need for a change in practice.
There is a lot of staff anxiety around communicating with patients who have complex communication needs, especially in regards to patients with learning disabilities. If staff have anxiety towards a patient with disabilities this can then make the patients hospital stay a very negative experience. With the ever-increasing number of patients with severe disabilities making use of health care services, there will only be a higher demand towards health care professionals to understand how to communicate with said patients.
With the ever-increasing number of patients with severe disabilities making use of health care services, there will only be a higher demand towards health care professionals to understand how to communicate with said patients
The creation of the actual toolkit has not been achieved yet, the main focus has been information gathering, backing up the reasoning behind future implementation.
Reflections on impact
By reducing staff anxiety deepening knowledge base and competence/confidence, lowering the threshold of communication, the experience for patients with complex communication needs can only improve.
As the toolkit has not yet been created, I have been unable to measure the impact of this particular project. However, I can talk about an experience where more information benefitted not just the patient, but also other health care professionals involved in their care.
I am a qualified residential support worker from the Netherlands, a country where you have to study for four years before you are allowed to work with people who have severe disabilities. Throughout my time as a support worker I have been constantly learning and adapting my own practice to the ever-changing needs of my patients. After 13 years in practice, I decided to train to become a children’s nurse. I am now in my final year and unfortunately, I have witnessed how poor communication can be between a nurse and a patient with disabilities (physical or learning disabilities).
By reducing staff anxiety deepening knowledge base and competence/confidence, lowering the threshold of communication, the experience for patients with complex communication needs can only improve
I will give you an example from my own practice:
When a patient was kicking and screaming, hurting their parents as well as the nurses, everyone stood there, thinking about what to do. I asked the nurse if I could engage and I was given permission to do so. By implementing behavioural strategies, refocussing the patient’s energy towards me, keeping my distance but constantly talking to the patient (introducing myself, focussing on what was around him) I was able to calm him down, provide the mother with some respite and reduce the patient’s anxiety as well as the anxiety of the patients around him. By finding the patient’s way of communicating, looking at him as a person, asking the mum for advice around his preferred method of communication, I was able to calm him down and improve the hospital experience for everyone involved. Afterwards, I was able to talk to the nurses as well as doctors involved and told them how I approached the situation.
Men with learning disabilities die, on average, 13 years earlier than men in the general population, while women with learning disabilities die 20 years earlier compared to the general population
The way forward
The concept of educating staff members can be implemented throughout, especially when linked to the possibility of having RCN Communication Champions. When the toolkit is implemented, the wards can potentially opt in for a one-time training session around communication with patients who have complex needs. Once staff have attended they can then opt in to become a champion.
This champion would be the main liaison with regards to the implementation of the toolkit in practice, as well as providing regular training sessions on different methods of communication. This will allow nursing staff to gain a wider range of skills throughout their practice. Although it will be focused towards nursing staff, the training sessions can be available for all health care professionals that want to learn more about the implementation of communication strategies for patients with complex needs.
Sustain momentum embed the project
When a staff member has opted in to become a RCN communication champion, they will be added to a mailing list whereby they would be sent a questionnaire quarterly to ascertain how things are progressing. If possible, this could also include a newsletter highlighting any significant news in regards to complex communication needs, as well as a possibility for staff members to share their stories in how the training, toolkit and being a RCN communication champion has changed their practice.
As a nursing student, qualifying this year, it would be an amazing opportunity for me to develop the toolkit as well as the one-day training session. But I have to be realistic that this is not something I would be able to do on my own, and I would like support from RCN staff, as well as make use of the resources already available through the RCN to help me develop this.
Maintaining contact with the RCN communication champions would have to involve RCN staff time, people that are willing to become points of contact for those out in the work field, perhaps presenting it at the RCN Learning Disability forum. Ascertaining the level of interest from leading professionals who may willing to be points of contact is a way of making this project both sustainable and something that led by highly experienced professionals.
Heslop P., Blair P., Fleming P., Hoghton, M., Marriott, A. and Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: Norah Fry Research Centre.
Lewis, P., Gaffney, R. J. and Wilson, N. J. (2016) ‘A narrative review of acute care nurses' experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers’, Journal of Clinical Nursing, 26, pp. 1473-1484.
Mencap (2012) Death by indifference: 74 deaths and counting A progress report 5 years on (accessed 15 October 2017).
National Institute of Health and Care Excellence (NICE) (2017) Cerebral palsy in under 25s: assessment and management NICE guideline [NG62] (accessed 05 November 2017).
Royal College of Nursing (2017) The Needs of People with Learning Disabilities: What pre-registration students should know. London: Royal College of Nursing.
Royal College of Paediatrics and Child Health (2018) Communicating with families when children have a life limiting condition and complex needs (accessed 05 November 2017).
Royal College of Speech and Language Therapists (2013) Five good communication standards: Reasonable adjustments to communication that individuals with learning disability and/or autism should expect in specialist hospital and residential settings. London: Royal College of Speech and Language Therapists.