A week in the life of an ‘acute liaison learning disability nurse’
Gerard Jennings (RNLD)
“All patient and carer names have been anonymised as per Nursing Midwifery Council’s (NMC) ‘the code’ (2015). Permission to share the edited stories has been granted from all patients/carers. All consent/capacity issues as per the Mental Capacity Act (2005)”
People do not always understand the role of a learning disability nurse (Wilson, 2014). “Are you a mental health nurse?” “So are you a carer then”? “L.D. Nurse? What’s an elderly nurse?” are personal examples that have been said to me. Some of the replies that Registered Nurse Learning Disabilities (RNLD) may offer back often can increase ambiguity, “yes we are registered nurses, we work everywhere…we do everything”. Whilst this is true, salient examples of our role must be highlighted and shared to increase awareness of what our field of nursing entails (Tuffrey-Wijne et al., 2013).
Although I was not aware of it before qualifying, an unofficial addition to the RNLD role is to make people recognise that we exist, and offer them an explanation of the work that we do. The cohort of students that I qualified with (April 2013 at Edge Hill University) inform me of their changing nursing roles post qualification. I use this valuable information when providing teaching sessions at local universities to highlight the diversity of RNLD jobs.
I am proud to be a RNLD, and wanted to share a snapshot week highlighting the role of a learning disability nurse working in an acute liaison role. I am employed alongside another RNLD, within the wider safeguarding team, at the Royal Liverpool and Broadgreen University Hospital Trust (RLBUHT), a city centre general hospital.
The role is to support evidence that patients with learning disabilities receive poorer care in acute settings than the general population (Mencap 2007; Michael, 2008; Mencap 2012; Heslop et al., 2013). Additionally, there are less people are applying for learning disability nursing with a 40% drop in applicants in the last 8 years leading to some universities stopping teaching the course (Council of Deans of Health, 2017; Royal College of Nursing, 2018).
My hope is that the following ‘week in the life of’ will entice people to study learning disability nursing, and help support some of the most vulnerable people in our society (Public Health England, 2015).
As our service covers only a working week, a typical Monday morning gives the liaison nurse an opportunity to catch up with referrals and emails from over the weekend. The nurses will examine who has been admitted and discharged from the wards, in turn generating a list of patients to visit. The list will include patients already on our caseload, and others that may need an assessment of their needs and diagnosis, in order to ascertain if they are to be supported by the learning disability team. This must be completed daily. In an ideal world this information would be automatically generated, however we must navigate the various systems to locate and generate the information ourselves.
Immediately on arrival, one of the ward managers anxiously contacted me as ‘Steve’ had self-harmed yesterday. Steve suffers with anxiety and has been made homeless. We have been working closely over the previous week of his admission. I have tried to cultivate an honest, therapeutic relationship with Steve who feels that there is limited understanding of his condition in a general hospital. We discussed implementing some positive coping strategies instead of self-harm, and we agreed that using a quiet space on the ward for him to mobilise (“pacing”) may benefit him. As part of a wider multi-disciplinary approach, contact was made with Steve’s community nurse, who has kindly agreed to support me on a joint visit later in the afternoon. Taking the time to listen to Steve is really important to him.
Upon return to the office, I had a message that ‘Tim’ is in the Emergency Department (ED). Tim is a non-verbal gentleman on the autistic spectrum, and was recently a patient for a long period at the hospital. A lengthy admission for Tim would potentially deskill and institutionalise him again. I was made aware from the consultant that Tim had a fall, possibly brought on from increased seizure activity. The aim was a rapid safe discharge. I immediately had conversations with medical staff, physiotherapists, a discharge manager, social worker, and of course Tim’s care coordinator with the aim of arranging a streamlined discharge plan. Crucially, after positive X-Ray results, Tim was safely discharged home. This all happened within 3 hours of entering our ED. A sense of a job well done.
Our team motto is ‘every patient, every day’, and over the following hours I visited all of the patients. This can often range from short visits ascertaining a patient’s physical and mental wellbeing, to longer bespoke support if necessary; a true holistic approach. A mum of a regular attender ‘Arnie’ forgot to bring her mobile phone charger, so as a ‘reasonable adjustment’ (The Equality Act, 2010) I procured her one, so she could contact her son for extra support for Arnie. In 2017, Arnie was underweight and there were concerns around his nutrition. The liaison team have worked closely with Arnie to access special care dentistry as an outpatient and liaised with the wider service to support with this admission for a scan. Arnie is eating well and has gained 3 stone in 12 months.
Arnie’s scan was successful, and he was discharged home. Mum and I had a conversation, and I offered ongoing support for any further admissions or appointments at the hospital. As I was leaving his room Arnie told me that I was the “red power ranger”, and he was the “blue”. I made him fully aware that I am always the blue power ranger!
In the afternoon, the community nurse arrived. We listened to Steve’s concerns, devising an action plan. This was shared with Steve in a written format. Part of our plan included giving Steve 30 minute’s daily with me, to give the opportunity for him to talk through concerns. Research shows talking therapy can help reduce self-harm for people with autism (NICE, 2004).
I arrived early to prepare some bespoke training for 20 new Occupational Therapists (OT) at 9am. The primary focus was highlighting the relationship between an OT and people with learning disabilities. The session lasted an hour and seemed to be well received from the audience, with good interaction and positive email feedback. Immediately afterwards, I had to provide our ‘foundation level learning disability’ session to staff receiving ‘Level 3 Safeguarding’ training. This training was also received positively, however afterwards I felt mentally drained from it. The focus was the overuse of abbreviations within hospitals. We discussed the effect this has on patients with cognitive impairment, and in turn can lead to missed appointments, and unnecessary visits to emergency departments (Mencap, 2018). An awareness of accessible information standards may be extremely beneficial to patients with learning disabilities (Mencap, 2018). Our service has trained nearly 2800 staff, students and volunteers since 2016.
I received a 20-minute telephone conversation from a worried mother of a young man with autism who is currently transitioning from children’s services into the adult sector. She was concerned over some of the challenges he is facing. Mrs Smith told me that she felt reassured that she could contact us directly. I arranged some desensitisation sessions where her son ‘Mark’ can walk through the clinical department at a time and date of their indication. People with autism receive improved hospital experiences when prior department visits are facilitated (Nicolaidis, Kripke and Raymaker, 2014). Part of our role is managing such visits. We discussed the design of a comprehensive care plan, including a completed ‘health passport’. Mrs Smith was noticeably calmer at the end of our conversation.
Fitting in with NHS England’s (2018) ‘ask listen do’ initiative the team undertake post discharge telephone contacts. The aim is discovering what a person’s hospital admission was like. The results will inform the clinical areas that supported them; potentially making amendments if any issues arise. I spoke to ‘Jack’ who reported that his “treatment was superb”, and felt the care was excellent. Furthermore, he stated that since receiving a health passport he has noticed an improvement in how he has been supported in hospital. I have documented this, and the information will be fed through the correct channels internally. This shows what we are doing is making a difference to the perception of hospital stay for people with learning disabilities and autism.
Steve was using the coping strategy of pacing around a quiet space when I visited him in the afternoon. He made me aware that he has been writing letters all night, and again this is another way for him to cope in this environment. However, Steve also disclosed that he had hurt himself again on the previous evening. He was increasingly anxious as he was supposed to be viewing his next potential property, but it did not happen as he is not medically fit yet. Steve’s focus was that if he did not go today he would not get a further chance to visit the house. I made him aware that once he is fit then he can revisit the property.
The Team received two new patient inpatient referrals, so I undertook a ‘reasonable adjustment risk assessment’ with them. The patients’ needs varied greatly, and therefore our involvement will be different in both cases. One individual had excellent communication and had capacity to make his own decisions (Mental Capacity Act, 2005) but has a history of verbal aggression.
The other patient cannot verbally communicate and has 24 hour carer support whilst in our hospital. Examples such as this highlight the principle of learning disability nursing and how support differs dependent on the individual and their needs. Our focus is the person, and we support them individually (RCN, 2018).
Steve and I met and he had harmed himself again the previous evening. I made him aware that his health condition meant the healing process takes longer, potentially slowing down his discharge. I gave Steve a linear process map explaining the consequences of his self-harm. He informed me that this was “enlightening” and stated that he would not self-harm that evening. I informed him that I will visit him every working day per our agreement. Providing non-judgmental consistency is needed to aid and support recovery (Dixon, Holoshitz and Nossel, 2016).
I visited two patients on the hospital’s other site. ‘Colin’ is a patient who has Asperger’s Syndrome, with a PhD, due to be discharged next few days. He aims to live his dream by becoming a contestant on ITV’s ‘The Chase’. The second patient, ‘Lomax’ is on the rehabilitation unit, and will be a patient for a prolonged period.
After visiting the patients on the wards, I had to provide training to the Trust-wide volunteers who we work closely with. I tailored training to them in a less formal, humorous manner. The aim was to help them understand what a patient with learning disabilities may require from a volunteer, and how their bedside activities and therapies have aided our patients previously, including relevant case studies. It is always useful to provide examples to illustrate the value of their work.
Positively, I have received two emails from the OT training on Monday morning, requesting an opportunity to become ‘Learning Disability Champions’ within the hospital. There are now over 75 champions, and the group is growing consistently. I emailed them back sending out a contract and inform them of the next champions training session. Our latest drive is for each champion to have a ‘One Page Profile’, and each clinical area to have learning disability communication board. I emailed the champions group two new articles relating to poor care of people with learning disabilities in hospitals, asking for their feedback. I feel a sense of extreme pride when organising, communicating and disseminating information to the champions
I received a telephone call from the local assessment and treatment unit to inform me that one of their patients who has been ‘sectioned’ as per the Mental Health Act (2007) will have to access our hospital in the near future for a clinical appointment. As in similar situations, the acute liaison team must work to provide a tailored, streamlined admission. Plans, including departmental challenges, safe routes through the ED, parking and staffing must be managed. The aim is to provide a successful clinical intervention, keeping the patient, staff and wider hospital population safe throughout.
On Tuesday’s and Thursday’s we visit regular attender patients. ‘William’ is autistic and is nonverbal. He needs full support from his dad, and our working relationship has included accessing other hospitals and working with community nurses in his local area.
The second patient ‘Harry’ can often exhibit aggressive behaviours and our role has been training the staff to modify their communication with him. Utilising a consistent approach, devoid of humorous communication has had a beneficial effect on his behaviour. Training staff to adapt their communication has been a challenge, but results have shown that a holistic person-centred approach can be achieved. Without learning disability nurses, I do not believe this would have been possible, and this view is echoed by the ward manager.
Jack (who had provided excellent feedback on the post discharge contact on Tuesday) was readmitted unwell. He looked upset and disillusioned when I revisited him. It is a strange sensation when a patient has been readmitted. Partly, we have a good working relationship and our team can help them, but also, they need further treatment and are unwell. I was sad to see him back, and wished him a speedy recovery, and added him to our caseload again.
Steve made me aware that he did not self-harm last night and “the thought never crossed my mind”. He thanked me for the linear care plan we devised together yesterday. He now has a computer to type letters, a quiet area for him to ‘pace’, and some books to read. Steve’s mood and manner indicated that he was the most settled that I have seen since he was admitted. This is an example of a learning disability nurse reflecting and amending their approach regularly to help a patient at crisis.
‘Michael’ is a regular attender. He had an appointment to see a consultant in the late afternoon and I was invited to support both Michael and his family. Upon discussion, I was made aware of a plan from the phlebotomy department where Michael would hold red, orange and green lidded blood pots. Michael pointed at the green lid as this indicated that he was ready to have his bloods taken. This gave me an idea that he could potentially utilise the traffic light picture on the front of his ‘health passport’ as his sign of consent to any medical intervention. Dad initially viewed this as a great idea to promote Michael’s independence and choice. However, Michael’s body language and facial expression changed and he looked cautious and upset. Dad asked him why, and Michael thought that the traffic lights meant he now had to get his bloods taken, with no preparation had been put in place for this intervention. The resulting consultation appeared to be difficult for Michael. He was far less engaging, possibly worried or concerned of the traffic light idea. Personally, I went from the elation of Steve ceasing his self-harm, to the low of Michael becoming disengaged within a two hour period. A rollercoaster of emotion.
The day started with important administrative ‘catch up’. The team had received 25 patient referrals this week. The patient spreadsheet was updated, all our discharge letters were sent to patients, and I completed five post discharge telephone calls.
The first call involved excellent feedback of the hospital care, and a special mention was given to the learning disability team. The majority of contacts are positive of both our service and the hospital in general. However, the following call was not so positive. Since September 2017, over 170 calls have been made, and this was the most negative one. ‘Mary’ lacks capacity, so I spoke to her mum. Mum informed me Mary came home in “a state” that was unacceptable, and Mary did not look well enough to be discharged. Mum stated that “people like Mary are complex so hospitals never get it right, I am used to it”. This feedback was difficult to hear as we had clearly not met the patient and her parent’s expectations. The exact reason why I chose this role was to change that perception of hospital care. I made Mary’s mum aware that I will highlight this issue, and contact her back. I informed her that “people like” her daughter need the voice of a learning disability nurse. I personally felt I let her down. I assured her that what had happened would be looked at and feedback would be given to her to support the ‘learning of lessons’.
My final visit to Steve of the week came after he returned from his visit to his potential new home, and he informed me that he initially liked it. Steve was hopeful that they will accept him. For the second consecutive day, Steve did not self-harm, although he stated, “I had the urge to”. Significantly, he coped without doing it. I drew Steve a diagram indicating a linear improvement in his physical health, mental well-being and social situation over the last week. I made him aware that even though he may focus on the negatives in situations, things are improving for him. He told me that he understood this, but the final conversation of my working week was Steve telling me that he “probably” will harm himself over the weekend.
The aim of this article was to illustrate the working week for an acute liaison learning disability nurse. The chosen week provided a representative example of this. We had to offer support for new patient admissions and work with discharges, including the administration work linked to both. There were numerous training sessions, both generic and bespoke. The team had to support patients and families attending outpatient appointments, organise future appointments and allows us to work on ‘desensitisation’ – a process to support people to recognise and manage their fears.
Each working day is varied, and we try to be responsive to the needs of the patients and the hospital so although there may be structured activities in our diary, the team are only a phone call away from a crisis at the Emergency Department or support needed in a clinical area. This daily uncertainty makes the role fluid and exciting, giving the nurse an opportunity to think quickly and courageously to help people with learning disabilities get equitable access to healthcare.
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