This case study and reflection was written by Caroline, who is a second-year learning disabilities (LD) student nurse, following her practice learning experience with the LD Liaison Service at an acute hospital.
Case Study
Peter is 17 years old with a diagnosis of autism spectrum disorder and he also has a learning disability which affects him with difficulties adapting to certain situations, interacting with others, and controlling his behaviours. He has difficulty speaking and tends to use prompts and gestures. Peter lives with his parents and older sister and attends a special school nearby. He does not like change and finds unfamiliar environments or disturbances to his daily routine distressing. He is highly sensitive to noise and has been prescribed ear defenders by a speech and language therapist but refuses to wear them.
For the past six months Peter has been having intermittent rashes around his face and neck. He has complained of pain in his fingers and knees by pointing to the areas. At times, his behavior is unsettled, and he cries. His GP has referred him to Rheumatology.
The LD Liaison team were alerted through the GP referral letter and booking system. Following this referral, my supervisor, Penny and I visited Peter and his family at home to complete a needs assessment and develop a Hospital Passport. This provides vital information about a person with a learning disability, including personal details, the medication they are taking, and any health conditions. The passport also includes information about how a person communicates and their likes and dislikes and helps health staff understand the needs of the individual and make reasonable adjustments to the care and treatment they provide.
During the process of developing Peter’s passport, I discovered from his parents that the main things that he finds distressing are:
- Babies crying /children screaming
- Unfamiliar / clinical /noisy environments
- Disruptions to his usual daily routines.
I discussed this information with Penny who recommended that I contacted the sister from the Rheumatology department to discuss a plan for Peter’s appointment. The sister suggested I work with Luca who is a third-year adult student nurse who was on his placement in the outpatient’s department. I let Penny know and arranged to visit Luca at the clinic. We discussed a plan of care for Peter’s visit with Penny and Luca’s practice supervisor, Rochelle, and they agreed that Luca and I should prepare for Peter’s visit and communicate to him what would happen on the day of his appointment. As we were discussing the routine of the Rheumatology outpatients, Luca asked about my placement with the LD liaison team as he had not had much experience of working with people with autism and learning disabilities. It was agreed that Luca could have a visit to the LD team.
With both supervisors in agreement and with our supernumerary status Luca and I met and together looked at what reasonable adjustments might be made to minimise disruption and distress for Peter when he attended his appointment. With Peter’s and his parents’ consent I shared the passport with Luca, and we discussed the triggers that may cause him distress. Luca outlined the ‘usual routine’ for an appointment at the clinic. We walked the route from the hospital main entrance to the clinic waiting room. Together we agreed the goal for Peter’s visit to outpatients was for him to be safe, comfortable and have a productive consultation with the doctor. To achieve this, we would need to:
- Minimise any exposure to known triggers
- Ensure that staff at the clinic were fully briefed about Peter and his needs
- Enable Peter and his parents to discuss his symptoms with the doctor with minimal distractions.
The appointment itself represented both a disruption to Peter’s routine and the need to go into an unfamiliar and noisy environment. The journey to the clinic via the main hospital entrance was going to be difficult as there are several corridors in the outpatient’s department. The route to the rheumatology clinic also passed the children’s outpatients department which was another potential trigger. Peter’s appointment was scheduled for 10.30am, which Luca pointed out was one of the busiest times. We discussed the trigger points for Peter with Penny, and she helped us make the following suggestions for reasonable adjustments for Peter’s visit:
- Peter’s appointment was changed from 10.30am to 8.30am, this is the first of the day, so there would be minimal waiting time and fewer people in the waiting areas. Peter would be able to go to school following his appointment, minimising disruption for the rest of his day.
- We examined and changed the route to outpatients; Peter could use a side entrance and therefore had only one corridor to pass through to get to the clinic.
- Luca made sure that the staff at the outpatient’s department had read Peter’s passport prior to his appointment and they were aware of his preferred communication styles and needs.
The out-patients department Sister, Peter and his parents agreed to these changes.
The appointment
- Peter was relaxed and did not appear anxious or distressed with the clinical procedures he experienced during the appointment.
- There was open and productive communication between the doctor, Peter and his parents, which enabled a full examination of Peter’s skin and joints.
- Peter was then referred for some further investigations.
- His current care plan was then adopted for future appointments.
Caroline’s Reflection
What I did: I worked with Peter and his family to develop a hospital passport and then worked collaboratively with hospital staff and Luca to enable Peter to attend his medical appointment to assess his pain, with limited distress to Peter. In partnership we gained an understanding of what was important to Peter, what part of the clinic visit might be distressing for him and then minimalized the potential disruption and distress for Peter, facilitating a successful out-patient appointment.
What I learnt: Without his hospital passport and our interventions Peter may have found the visit very challenging and it is likely that he would not have had the opportunity to be effectively assessed by the rheumatology team, to discuss his health condition fully, or receive the most appropriate interventions.
Luca and I were able to discuss health inequalities affecting people with learning disabilities and autism. Such inequalities often mean limited access to services, which can contribute to poorer physical and mental health outcomes. It is estimated, that on average, the life expectancy of women with a learning disability is 18 years shorter than for women in the general population and 14 years shorter for men (NHS Digital 2019). We also discussed the barriers to healthcare experienced by people with learning disabilities and autism including failure to make a correct diagnosis and inadequate after care and follow-up (Heslop et al. 2013).
This experience helped me to understand the importance of person-centred holistic care and has prompted me to read further about this and think more about how this impacts people's health and care needs.
Luca was able to explain practice and procedures in the outpatient clinic and help me gain an understanding of how a skin rash can be associated with joint pain in cases of psoriatic arthritis. This was helpful for my learning experience, as I was not aware of this condition.
What I will do differently: I believe my understanding of reasonable adjustments gained by this experience will help me to work more closely with people and their families. By working with Luca, I gained an insight into adult nursing and how we are working towards meeting the same proficiencies within a different field of practice. Luca also gained some insights into learning disabilities nursing and demonstrated what can be achieved by collaborating. Working with Luca and Peter helped me think differently about holistic care. This experience has changed my approach to practice, and I now feel more confident in acting as an advocate for people, improving health promotion and reducing health inequalities.
Supervisors Reflection
What I did: I was asked to be practice supervisor for a second-year student nurse, Caroline, during her practice experience with the learning disabilities (LD) liaison team where I work. Caroline’s assessor Lynn asked me to supervise her to undertake a needs assessment to help her understand and apply the principles and processes for making reasonable adjustments.
I arranged for Caroline to accompany me to a home visit to assess the needs of a 17-year-old Peter, who has a diagnosis of autism spectrum disorder and a learning disability and needed to attend a hospital appointment. In addition to the home visit, Caroline worked with an adult field student nurse, Luca, to plan for Peter’s visit including the reasonable adjustments that were made. This involved both direct and indirect supervision of both students allowing them some degree of autonomy to explore the options available and to make recommendations for the reasonable adjustments. This included me and Rochelle, Luca’s supervisor, who works in out-patients, working together. I gave both students feedback on their progress and achievements and ensured that both practice assessors were informed.
What I learned: I learnt that, as a LD nurse I can supervise an adult field student, something that I was previously unsure of. This has prompted me to read more around practice supervision on the NMC SSSA hub.
By working together, towards the same proficiency the students learned from each other. Luca developed an understanding of the role of the LD liaison team and Caroline learned about the physical health condition that led to Peter’s referral to out-patients. I was struck how this contributed to the holistic person-centered care of Peter, as well as being valuable learning that enhanced Caroline and Luca’s understanding of Peter’s care.
In addition, I felt more confident about the indirect supervision of students. While Caroline was directly supervised by me when we undertook the home visit assessment, other aspects of this practice learning experience involved indirectly supervising Luca. Caroline and Luca met for some independent learning time to discuss and plan Peter’s reasonable adjustments. They met independently on three occasions to discuss the Equality Act and what would constitute reasonable adjustments and discuss Peter’s plan of care. They regularly gave me feedback about their findings and their approach to supporting Peter.
What I will do differently: I am working with the sister in out-patients to enable more learning disabilities and adult field students to work collaboratively to consider reasonable adjustments when a person with autism or a learning disability needs to attend an appointment. Furthermore, we are making arrangements for LD student nurses to spend some time in the out-patients and for adult student nurses to spend time with LD liaison. I have discussed this with my manager and the university link lecturer who are both supportive of this innovation.
Because this collaborative experience worked well, I have met the sister on the day surgery unit, who is keen for adult students in this area to work with a learning disability student.
Putting proficiencies into practice
The Standards of proficiency for registered nurses list the knowledge, skills and behaviours that every nurse must demonstrate by the end of their programme.
The standards are set out in seven sections called 'platforms'.
There are two annexes in these standards that list the skills nurses must have, and the procedures they must be able to do when they join our register.
One focuses on communication and relationship skills, and the other on nursing procedures.
Through some examples see how Caroline and Luca were able to demonstrate certain outcomes of these proficiencies through their learning experiences.
What Caroline and Luca did:
Caroline and Luca put Peter’s needs at the center of their decision making. They took time to discover his viewpoint and preferences. This was documented in the Hospital Passport and Caroline and Luca worked with the multidisciplinary team to ensure that Peter’s needs and preferences were paramount.
What this demonstrated:
This showed that Caroline and Luca understood the need to base all decisions regarding care and interventions on people’s needs and preferences, recognising and addressing personal and external factors that may unduly influence their decisions (1.9) and influence Peter’s care. They demonstrated the knowledge, skills and ability to think critically when applying evidence and drawing on experience to make evidence informed decisions in all situations (1.8). Working with Peter they showed that they could communicate effectively using a range of skills and strategies with colleagues and people at all stages of life and with a range of mental, physical, cognitive and behavioural health challenges (1.11).
What Caroline and Luca did:
Caroline and Luca showed an awareness of the health inequalities affecting people with learning disabilities and autism, specifically associated with barriers they can face in accessing timely, appropriate and effective healthcare. It was understood that Peter, on account of his learning disability, may not, without their intervention, have had the opportunity for his health condition to be investigated.
What this demonstrated:
Caroline and Luca showed an understanding of and acted on factors affecting Peter that may have led to health outcome inequalities (2.3).
What Caroline and Luca did:
Caroline and Luca had insight into what might be challenging for Peter and his family. They used this information obtained during their assessment to identify the priorities and requirements for person-centred and evidence-based nursing intervention and support. In addition, they recognised Peter’s vulnerability and the potential for harm if this appointment was not planned well. Their careful planning led to minimal disruption for Peter and the running of the clinic and allowed him to access the healthcare he needed.
What this demonstrated:
Caroline and Luca showed an understanding and application of the principles and processes for making reasonable adjustments (3.7). They shared assessments, planning, decision making and goal setting for Peter, demonstrating a person-centred approach to nursing care (3.4). They showed they could recognise and assess people at risk of harm and the situations that may put them at risk, ensuring prompt action is taken to safeguard those who are vulnerable (3.9).
What Caroline and Luca did:
Caroline and Luca showed an understanding of what was important to Peter and his family. They recognized that Peter’s skin condition and joint pain was affecting his life negatively and was making him miserable. They also recognised that Peter’s parents had previous, difficult experiences with hospital care and felt that, on occasions, his health problems had not been taken seriously on account of his learning disability and autism.
What this demonstrated:
Caroline and Luca showed what is important to Peter and his family and used this knowledge to ensure their needs for safety, dignity, privacy and comfort were met. They acted as role models for others in providing evidence-based person-centred care (4.1). By identifying what Peter found difficult enabled them to plan his hospital appointment and avoid triggers to assure his safety, dignity, and comfort so he could attend the appointment with minimal distress and receive interventions.
What Caroline and Luca did:
Through indirect supervision Caroline and Luca were empowered by their supervisors to take lead roles in planning the outpatient’s appointment for Peter. They communicated with the sister in charge and were able to make the necessary arrangements for changing the appointment time and ensuring that outpatient staff had read Peter’s Hospital Passport.
What this demonstrated:
Caroline and Luca showed leadership potential by demonstrating an ability to guide, support and motivate individuals and interact confidently with other members of the care team (5.6).
What Caroline and Luca did:
Peter experiences severe distress in unfamiliar environments and when his daily routine is disrupted. Caroline and Luca understood that the trip to outpatients could trigger distress with a potential to compromise Peter’s safety and the safety of others. The measures taken were introduced to reduce these triggers and were effective in mitigating the risks to his and others safety.
What this demonstrated:
Caroline and Luca identified the need to make improvements and proactively respond to potential hazards that may have affected the safety of people (6.6).
What Caroline and Luca did:
Under supervision, Caroline and Luca coordinated and managed the complexities involved in Peter’s care. This included liaison with the out-patient clinic clerks to change the appointment time and the facilities department to make sure the side door was open at the time of Peter’s appointment. They spoke to staff at the clinic, including the consultant dermatologist, to make sure they were aware of the adjustments made for Peter’s visit.
What this demonstrated:
Caroline and Luca showed an understanding of the principles of partnership, collaboration, and interagency working across all relevant sectors (7.1). They also applied this knowledge to the processes involved in supporting people and families with a range of care needs to maintain optimal independence and avoid unnecessary interventions and disruptions to their lives (7.8).
Test your understanding
Questions to prompt reflection and discussion
Peter has further clinic appointments. This includes blood tests, x-rays, a skin biopsy and a further consultation with the rheumatologist. A course of anti-inflammatory medication has been prescribed
Thinking about Annexe A and Annexe B, what opportunities will there be for Caroline and Luca to achieve some of these skills when working with Peter for these further interventions?
References
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD).Bristol: Norah Fry Research Centre. https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
NHS Digital (2019). Health and Care of People with Learning Disabilities: 2017-18. Health and Social Care Information Centre https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2017-to-2018
